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Exploring colorectal cancer diagnosis disclosure to first-degree relatives :
b an african american family case series
h [electronic resource] /
by Kamilah Thomas.
[Tampa, Fla] :
University of South Florida,
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Dissertation (Ph.D.)--University of South Florida, 2010.
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ABSTRACT: Colorectal cancer (CRC) is the second leading cancer killer in the United States and the third most common cancer in African American men and women. Though the overall death rates have declined, this reduction in mortality is smaller for African Americans than for Whites. Factors that are protective against colorectal cancer include occupational or recreational physical activity, a diet high in fruits and vegetables, and colorectal cancer screening with removal of polyps (polypectomy) before they progress to cancer. Compliance with CRC screening recommendations requires people to know if a first-degree relative (parent, sibling, and child) or second-degree relative (aunt, uncle, niece, nephew, and grandparent) has been diagnosed with colorectal cancer. Little is known about how patients disclose this information to their relatives and what type of information is disclosed when disclosure takes place. The role of the family has long been overlooked in research on African American health screening behavior despite the fact that family interventions have been known to produce favorable outcomes in diet, nutrition, and exercise. This qualitative study explored the disclosure process among African American colorectal cancer survivors and FDRs with whom they shared their diagnosis. Of special interest was the role of social support in the disclosure process and the criteria used to decide which relatives to tell. Findings from this study will be used to advance the knowledge about the dynamics of CRC disclosure to first-degree relatives in African American families and ultimately increase CRC screening in relatives.
Advisor: Julie Baldwin, Ph.D.
x Community and Family Health
t USF Electronic Theses and Dissertations.
Exploring Colorectal Cancer Diagnosis Disclosure to First-Degree Relatives: An African American Family Case Series by Kamilah B. Thomas A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Communi ty and Family Health College of Public Health University of South Florida Co-Major Professor: JulieA. Baldwin,Ph.D. Co-Major Professor: Carol Bryant, Ph.D. Martha L. Coulter, Dr.P.H. Clement K. Gwede, Ph.D. H. Roy Kaplan, Ph.D. Date of Approval: March 25, 2010 Keywords: African Americans, colorectal cancer, disease disclosure, family secrets, social support Copyright 2010, Kamilah B. Thomas
Dedication I dedicate this Doctoral disse rtation to my parents, Aldwyn and Claudette Thomas. There is no doubt in my mind that without their unconditional love, support, and encouragement, I would not have completed this great challenge.
Acknowledgments This work was supported by a grant (C. K. Gwede, PI) from the Department of Interdisciplinary Oncology, H. Lee Moffitt Cancer Center & Rese arch Institute, 20072009. I would like to thank God for all of the blessings I have received. I would like to acknowledgethose who help ed make this dissertation possible: My mentor Dr. Clement K. Gwede for his in spirational instruction, guidance, and support of my research, Dr. Julie Baldwin, my Major Professor, advi sor, and mentor for her guidance, caring words, and encouragement throughout, Dr. Carol Bryant, who generously gave her time and expertise to better my work, The other members of my dissertation committee,Drs. Martha Coulter & H. Roy Kaplan, I thank them for their contribu tionand their good-natured support, Dr. Gwendolyn P. Quinn whoinspired me to ha ng in there whenthings became difficult, Dr. Kalyani Derasari, my physician, for ne ver giving up on meand keeping me alive, Mr. Will Tarver for histechnicalassistan ce and work as a secondary coder, Ms. Katrina Debnam for herassistanceas a secondary coder. Finally, I would also like to acknowledge my siblings, Tamesha Thomas and Aldwyn Thomas, II along with my aunts, uncles, cousins, friends,church family,and cohort memberswho have prayed for my successa nd supported me throughout this process.
i Table of Contents List of Tablesiv List of Figures v Abstractvi Chapter One:Introduction1 Screening Recommendations2 Need for the Study4 Theoretical Basis of the Study6 Social Support6 Family Secrets 7 Purpose of the Study8 Patient Research Questions8 First-Degree Relatives Research Questions9 Study Assumptions9 Study Delimitations9 Study Limitations10 Definitions of Relevant Terms10 Chapter Two:Review of the Literature 12 Health Disparities in the U.S. Defined12 Psychosocial Factors and Health Disparities13 Biology and Health Disparities14 Race and Health Disparities15 Health Disparities and Cancer16 Colorectal Cancer and Health Disparities16 Colorectal Cancer Screening Recommendations17 Colorectal Cancerand Diagnosis Disclosure19 Genetic Risk19 Other Cancers22 Family Secrets Framework25 Social Support Framework28 Summary29 Chapter Three: Research Methods 31 Sample33 St. Josephs Hospital Cancer Institute33 Advantages34 Disadvantages34
ii H. Lee Moffitt Cancer Center35 Advantages35 Disadvantages36 Eligibility Criteria36 Recruiting Participants37 Patients37 First-Degree Relatives38 Token of Appreciation38 Selection and Sample Size38 Instrument41 Face-to-Face and Telephone Interview Protocol41 Data Management44 Data Analysis44 Use of Atlas.tiSoftware47 Patient and FDR Analysis48 Family Group Comparison48 Chapter Four: Results50 Section I: Patients52 Age, Marital Status, and Health Insurance52 Social Economic Status52 In-depthInterviews56 Patient Individual Interview Findings56 General Colorectal Cancer Diagnosis Experience56 Disclosure Experience58 Communication Context61 Expectations and Reality of Disclosure63 Effects of Disclosure67 Current Perceptions of Colorectal Cancer70 Section II:First-Degree Relatives72 Age, Marital Status, and Health Insurance72 Social Economic Status72 Telephone Interviews75 First-degree Relative Tele phone Interview Findings75 Disclosure Experience75 Communication Context78 Reaction to Disclosure80 Impact of Disclosure81 Current Perceptions of Colorectal Cancer84 Section III: Family Group Comparison84 Description of Family Groups84 Family Group 184 Family Group 287 Family Group 389 Family Group 491 Family Group 594
iii Summary98 Chapter Five: Discussion and Conclusions100 Colorectal Cancer Disparities100 Disclosure102 FDR Screening105 Spirituality106 Contributions to Theory106 Contributions to Public Health Practice113 Strengths and Limitations117 Recommendations for Future Research120 Conclusions121 References123 Appendices132 Appendix A: Concept Chart133 Appendix B: IRB Approval Letters134 Appendix C: Participant Recruitment Letters137 Appendix D: Informed Consent Forms140 Appendix E: Interview Guides163 Appendix F: Thank You Note167 About the authorEnd Page
iv List of Tables Table 1Research Questions & Theoreti cal Frameworks (Patient Version)43 Table 2Research Questions & Theore tical Frameworks (FDR Version)44 Table 3Sex, Age, Marital Status, & Health Insurance (Patients)54 Table 4Education, Employment & Annua l Household Income (Patients)55 Table 5Sex, Age, Relationship, Marita l Status & Health Insurance (FDRs)73 Table 6Education, Employment & A nnual Household Income (FDRs)74 Table 7Family Group 186 Table 8Family Group 288 Table 9Family Group 390 Table 10Family Group 4 92 Table 11Family Group 5 95 Table 12Evidence of Theory in Patient Responses 108 Table 13Evidence of Theory in FDR Responses112
v List of Figures Figure 1Participant & FDR Enrollment40
vi Exploring Colorectal Cancer Diagnosis Disclosure to First-Degree Relatives: An African American Family Case Series Kamilah B. Thomas Abstract Colorectal cancer (CRC) is the second leading cancer killer in the United States and the third most common cancer in African Amer ican men and women. Though the overall death rates have declined, this reduction in mortality is smaller for African Americans than for Whites. Factors that are protective against colorectal cancer include occupational or recreatio nal physical activity, a diet high in fruits and vegetables, and colorectal cancer screening with removal of polyps (polypectomy) before they progress to cancer. Compliance with CRC screening recommendations requires people to know if a first-degree relative (parent, sibling, and child) or second-degree relative (aunt, uncle, niece, nephew, and grandparent) has been di agnosed with colorectal cancer. Little is known about how patients disclose this information to their relatives and what type of information is disclosed when disclosure ta kes place. The role of the family has long been overlooked in research on African Ameri can health screening behavior despite the fact that family interventions have been known to produce favorable outcomes in diet, nutrition, and exercise. This qualitativestudy exploredthe disclosure process among African American colorectal cancer survivors and FDRs with whom they shared their diagnosis. Of special interest was the role of social support in the disclosure process and the criteria used to decide which relatives to tell. Findings from this study will be used to
vii advance the knowledge about the dynamics of CRC disclosure to first-degree relatives in African American familiesand ultimately increase CRC screening in relatives.
1 ChapterOne Introduction Theoverall health of the United States (U.S.) population lags behind that of most industrialized nations due to the persistent and growing disparities in mortality, morbidity, and disability between Whites and people of color (Brulle & Pellow, 2006). African Americans bear a disproportionate burd en of many health problems. Morbidity and mortality are higher among African American men than any other racial or ethnic group (Plowden & Miller, 2000). Colorectal cancer (CRC) is of particular importance because it is the thirdleading cancer killer in the United States (American Cancer Society [ACS], 2009)and the third most common cancer in African American men and women (ACS, 2007). CRC is a disease in which malignant (cancer) cells form in the tissues of the colon or the rectum (National Cancer Institute [NCI], 2008). An estimated 7,120deaths from CRC were expected to occurin 2009among African Am ericans (ACS, 2009). The higher death rates account for one-fourth of the disparity in ca ncer death rates between African-American and white women and 11% of the disparity between African American and white men (ACS, 2007). Though the overall deat h rates have declined, this reduction in mortality is smaller for African American s than for Whites. Chen et al. (1997)conducted a cancer survival study and found that blacks have a poor er colon cancer survival rate than white patients and have a more advanced stage of disease at diagnosis.
2 An estimated 16, 440 cases of colorect al cancer occurred among African Americans in 2007 (ACS, 2007). Incidence ra tes among African American men and women are higher than those among whites (ACS, 2007). Though the exact causes of the disparity are unknown, there are several factors th at increase the risk of colorectal cancer including obesity, physical inactivity, cigarette smoking, a diet high in red or processed meat, and heavy alcohol consumption (ACS, 2007, p. 10). Additionally, relatives of CRC patients have an increased risk of the diseas e with increasing strength of family history and younger age of diagnosis in relatives (ACS, 2007; NCI, 2008). Improved preventive care may have an impact on narrowing the colon cancer incidence and survival gaps in the Afri can American population. Factors that are protective against colorectal cancer include occupational or recreational physical activity, a diet high in fruits and vegetables, and colorectal cancer screening with removal of polyps (polypectomy) before they progress to cancer (ACS, 2009). Therefore it is important for African Ameri can men and women to engage in healthy behaviors that allow for prevention and earlydetection of colon cancer. Screening Recommendations An overview of the screening guidelines recommended by professional health organizations may provide further background on this important issue. The American Cancer Society, the American College of Radiology, and the U.S. Multi-Society Task force on Colorectal Cancer (a consortium representing the American College of Gastroenterology, the American Society of Gastrointestinal Endoscopy, the American Gastroenterological Association, and repr esentation from the American College of Physicians) collaborated on updated consensus guidelines in March 2008 (ACS, 2008).
3 The new guidelines distinguish between screening tests that primarily detect cancer and those that are more likely to detect bot h cancer and adenomatous polyps (ACS, 2008). The updated guidelines recommend men and wo men at average risk for CRC to begin screening at age 50 using one of the following preferred tests to screen for polyps and cancer: 1) flexible sigmoidoscopy every 5 years, 2) colonoscopy every 10 years 3) double-contrast barium enema every 5 years, or 4) CT colonography (virtual colonoscopy) every 5years (ACS, 2008; Levin et al., 2008).The USPSTF (2008) recommends screening for colorectal can cer using fecal occult blood testing, sigmoidoscopy, or colonoscopy in adults, beginning at age 50 years and continuing until age 75 years. The following tests are primarily effective at detecting cancer alone because the opportunity for prevention is limited and not th e primary goal: 1) fecal occult blood test (FOBT) annually, and 2) Stool DNA test wh ich currently has an uncertain test time interval. Screening at an earlier age is recommended for those who have a first-degree relative (FDR) with a history of colorectal cancer or polypsyounger than 60 yearsof age, two FDRs of any age with a history of CRC, or a family history of familial adenomatous polyposis or hereditary non-polyposis co lon cancer (Read & Kodner, 1999).The United States Preventive Services Task Force (USPSTF) has determined that the net benefits of screening is substantial for adults age 50 to 75 years(2008).However, updated USPSTF guidelines recommends against routine screenin g for colorectal cancer in adults ages 7685(USPSTF, 2008).
4 For people with increased risk, complian ce with these screening recommendations requires people to know if a first-degree rela tive (parent, sibling, child) or second-degree relative (aunt, uncle, niece, nephew, and grandparent)has been diagnosed with colon cancer (Forrest et al., 2003). When peopl e do not share information about cancer diagnosis or genetic testing in formation with relatives at ri sk, relatives are denied the possibility of taking appropriate preventive m easures (Forrest et al., 2003). Research has found that most patients disclo se genetic testing information to their first-degree and second-degree relatives (Hallowe ll et al., 2005). A general but central research question for this dissertation is what decision making criteria do patients use to help them decide to disclose or not disclose a cancer diagnosis with family members other than their spouse? Need for the Study For FDRs with increased CRC familial risk to adhere to the recommendation to be screened at an earlier age, knowledge of a first-degree relatives CRC diagnosis is important for determining the appropriate time to be screened. Research has found that most patients disclose gene tic information to their fi rst degree and second-degree relatives (Hallowell et al., 2005). Though rese arch has provided information about which family members may receive genetic information, little is known about how patients disclose this information to their relatives a nd what type of information is disclosed when disclosure takes place (Hallo well et al., 2005). This is especially true for families in which men, rather than women, are at risk (Hallowell et al., 2005). The role of the family has long been ove rlooked in research on African American health screening despite the fact that famil y interventions have been known to produce
5 favorable outcomes in diet, nutrition, and ex ercise (Salminen, Vahlberg, Ojanlatva, & Kivela, 2005). The social context of the famil y has an important and unique influence on individual and general prac titioner consultation behavior (Cardol et al., 2007). In addition, the World Health Organization (WHO, 1976)has characterized the family as the primary social agent in the promo tion of health and well-being (p. 17). Given the important role of family in fluence on health behavior, health professionals may lean towards encouraging patients to disclose a CRC diagnosis to firstdegree relatives. Research suggests that people refrain from disclosing sensitive information because of the need for self-protection or other protection (Afifi, Olsen, & Armstrong, 2005). For instance, if a family member reacts aggressively, individuals may refrain from revealing a secret for fear of judgment and ridicule, or fear the information may be used against them (self-protecti on) (Afifi, Olson, & Armstrong, 2005). In addition, individuals may fear that the disclo sure will hurt the target of the disclosure, damage their relationship with that pers on, or impact other family members (otherprotection) (Afifi et al., 2005). Therefore, it is important to understand the dynamics of disease disclosure from the pa tients perspective in order for health professionals to understand the pros and cons of disease disclo sure and the effects of disclosure on the patient. This study explored the disclosure process among African American colorectal cancer survivors and FDRs with whom they shared their diagnosis. Of special interest was1) the role of social support in the disc losure process and 2) the criteria used to decide which relatives to tell. Findings from this study will be used to advance the lack of knowledge about the dynamics of CRC disclosure to first-degree relatives in African
6 Americans. The findings cont ribute to an understanding of the disclosure decisionmaking patterns among African Americans. Understanding the positive and negative impacts of CRC diagnosis disclosure among African Americans will lead to the identification of appropriate recommendations for disease di sclosure to a first-degree relative. Additionally, an increased understa nding of the criteria one uses to make a decision about CRC disclosure will contribute to the development of culturally relevant interventions that contribute to narrowing the CRC health disparity among African Americans. Theoretical Basis of the Study Social support. Social support has been identified as an important factor in cancer survivorship. A diagnosis of cancer af fects the individual diagnosed as well as his/her family and others in his/her social ne twork. Social support has been defined and measured in many different ways. Cobb ( 1976)defines social support as information from others that tells a person he or she is cared for, loved, esteemed, and part of a network of social obligations. According to House (1981)social support is the functional content of relationships which can be categor ized along four basic types of support 1) Emotional support involves the provision of empathy, love, trust, and caring; 2) Instrumental support involves the provision of tangible aid and services that directly assist a person in need; 3) Informational s upport is the provision of advice, suggestions, and information that a person can use in addressing problems; 4) Appraisal support involves the provision of information that is us eful for self-evaluati on purposes, that is, constructive feedback, affirm ation, and social comparis on. Uchino (2004) notes that whereas many aspects of social support are de fined separately in theory, these functions
7 of social support are associated with each other,and not easily divisible in daily life. Additionally,relationships that provide one type of suppor t often also provide other types. Though the parts of social suppor t are difficult to examine separately, the importance of social support for patients diag nosed with cancer warrants further research and was examined in this study. This is especiallyrelevant when it comes to revealing private information such as a colorectal cancer diagnosis that maybe deemed as a family secret. Family secrets. Family secrets or private information within families can have important and relationa l consequences. The potential cons equences that accompany the disclosure of a family secret make decisions about whether to reveal such information quite complex. According to Vangelisti, Caughlin, & Timmerman (2001), individuals who are thinking about whether to disclose information to a family member have many factors to consider. Vangelisti et al. (2001) reviewed criteria that individuals use to determine whether to reveal information de emed personal or intimate. It was found that people are most likely to reveal secrets when: 1) the secrets threaten their own well-being both physically and psychologically; 2) th e anticipated response from a confidant is positive; 3) the communication context creat es an opening or an opportunity for disclosure; 4) the impact of the disclosure on family members is positive such as receiving social support; and 5) when the disclo sure itself brings some reward such as an empathetic response or social validationbecause the secret keeper has the ability to grant access to another.
8 Purpose of the Study Given the importance of understanding CRC disease disclosure and thecorrect CRCscreening intervals, this research examined the disclosure process among African American colorectal cancer patients. The specific research questions follow. Patient Research Questions Question 1: What factors influence patients decisions to reveal a CRC diagnosis to family members? Question 2: What decision-making criteria do patients use to help them decide to disclose or not disclose a CRC diagnosis(including whether disclosure:a) threatens the patients well-being; b) the anticipated responsefrom a confidant is positive; c) the communication context creates an opening as in finding an opportunity for disclosure; d) the impact of the disclosure on family members is positive such as receiving social support; and e) when the disclosure itself brings some reward such as social validation)? Question 3: What roles do emotional, instrume ntal, informational, a nd appraisal types of social support play in a patients decision to disclose his/herdiagnosis to an FDR?
9 First-degree RelativeResearch Questions Question 4: How do FDRs perceive the info rmation they received about the patients diagnosis? Question 5: How do diagnosed patients influen ce the screening behaviors of their FDRs through emotional support, instrumental s upport, informational s upport, and appraisal support? Study Assumptions 1.The patients reported their experiences with CRC disclosure to the best of their knowledge/memory and did not fa lsify their recollections. 2. The FDRs reported their perceptions and th e effects of learning about their family members diagnosis to the best of their knowledge/memory and did not falsify their recollections. Study Delimitations The following delimitations were imposed on this study: 1.Results from the qualitative data by definition cannot be generalized to all African American colorectal cancer patients. 2.Colorectal cancer patients had to be at least 18 years of age. 3.Colorectal Cancer patie nts hadto be six months to 4 years post treatment. 4.Colorectal cancer patients could not be going through active treatment at the time of the study. 5.Colorectal cancer patients had to have at least one living first-degree relative. 6.First-degree relatives (parent, sibling, or child) hadto be at least 18 years of age.
10 7.First-degree relatives (parent, sibling, or child) could not have a personal history of colorectal cancer. Study Limitations The following are limitations of this study: 1.Patients and family members who participated in the interview may have been motivated to respond due to their positive or negative attitude s about disclosure. 2.Results of the study cannot be generalized to all patients with colorectal cancer or all family members of colorectal cancer patients. 3.Results from the study are based on self-re ports, which are based on recall of events six months to five years in the past. Definitions of Relevant Terms African American: African American will be defined as those people who identify as being black and live in the United States. Th is may also include men and women who do not self-identify as being African American such as Afro-Caribbeans and Africans. ATLAS.ti : ATLAS.tiis computer software used for the qualitative analysis of large bodies of textual, graphical, a udio, and video data. It offers sophisticated tools to manage, extract, compare, explore, and reassemble m eaningful segments of large amounts of data in flexible and creative, yet systematic ways The program provides tools that let the user locate, code, and annotate findings in primary data material, to weig h and evaluate their importance, and to visualize co mplex relations between them. Colorectal Cancer (CRC): Colorectal Cancer is a disease in which malignant (cancer) cells form in the tissues of th e colon or the rectum (NCI, 2008).
11 Colorectal Cancer Treatment: Colorectal Cancer Treatment will be defined as primary surgery on the colorectal area with curative intent or any type of radiation or chemotherapy treatment. Disclosure: Disclosure will be defined as sharing information about a CRC diagnosis with someone other than a healthcare professional. First Degree Relative (FDR): First-degree relative will be defined as abiological parent, sibling, or child. St.JosephsHospitalCancerInstitute(SJHCI): St.JosephsHospital(SJH)isthelargest hospitalintheTampaBayareaaccreditedbytheAmericanCollegeofSurgeons.SJHCI providesadvancedtechnologyandcancercare(SJH,2010). H. Lee Moffitt Cancer Center and Research Institute (HLMCC): Moffitt Cancer Center and Research Institute is a NationalCancerInstitute(NCI)ComprehensiveCancer Center,locatedinTampa,FL.Moffittfocusesonthedevelopmentofearlystage translationalresearchaimedattherapidtranslationofscientificdiscoveriestobenefit patientcare(H.LeeMoffittCancerCenter&ResearchInstitute[HLMCC],2007).
12 ChapterTwo Literature Review The following literature reviewwill provide a historical overview of health disparities in the United States. Next, the impact of health disparities on cancer morbidity and mortality will be discussed with a focus on colorectal cancer and colorectal cancer screening rates and barriers. An overview of the theoretical frameworks that guided the study will be provided including if and how they have been used to address colorectal cancer in the past. Finally, the empirical evidence examining diagnosis disclosure is discussed, including an explanation of the gaps in the literature and a discussion on how this study attempted to address them. Health Disparities in the U.S. Defined The National Institutes of Health (NIH)defines health disparity as the differences in the incidence, prevalence, mortality, and burden of disease and other adverse health conditions that exist am ong specific population groups in the United States (2009). In 2000, United States Pub lic Law 106-525, also known as the "Minority Health and Health Disparities Research and Education Act," provided a legal definition of health disparities: A population is a health disparity population if there is a significant disparity in the overall rate of disease incidence, prevalence, morbidity, mortality or survival rates in the population as compared to th e health status of the general population.
13 In the U.S., slavery was rationalized on the basis of racism, an ideology of oppression based on a belief in th e inherent biological inferi ority of one race and the superiority of another (Fisce lla & Williams, 2004). The vestiges of slavery are revealed in the health status of African Americans in the U.S. given that biological or inherited differences associated with race make only a minor contribution to the disparate cancer burden among African Americans in the U.S. (ACS, 2007). Genetic variation within race is greater than between races (Freeman, 1998); however, life expectancy, morbidity, and mortality seem to place the burden of illness and disease on certain segments of the population. Psychosocial Factors an d Health Disparities In 1990 the life expectancy at birth fo r the white population was seven years longer than for the black population. By 2007the difference decreased to 4.6 years (National Center for Health Statistics [NCHS], 2009). Though the gap in life expectancy between the black and white populations has narrowed, disparity still exists. The overall mortality was 25% higher for black Americans than for white Americans in 2007and the age-adjusted death rates for the black popul ation exceeded those for the white population by 48% for stroke, 31% for heart diseas e, 21% for cancer, 113% for diabetes,and 786% for HIV disease (NCHS, 2009). These statistics provide the evidence that disparities in health exist. Many of the causes of disparity point to socioeconomic differences. When socioeconomic factors are controlled, disparities diminish significantly and disappear altogether in some cases (Smedley, Stith, & Nelson, 2003). However, the majority of studies find that racial and ethnic disparities remain even after adjustment for
14 socioeconomic and other healthcare access-re lated factors(Smedley et al., 2003). If one racial, ethnic or other populati on has a lower use rate even among the insured members of the group, it could be that other barriers to access including availability, overt or covert discrimination, care-seeking beha viors, or barriers that are difficult to measure, may be obstacles to care (p. 6). In addition to access, health practices, psychosocial stress, and environmental exposures contribute to disparit y. Given this reality, it is important to acknowledge that racial and ethnic disparities are found in ma ny sectors of American life. African Americans, Hispanics, American Indians, and Pacific Islanders, and someAsianAmerican subgroups are disproportionately re presented in lower socioeconomic ranks, in lower quality schools, and in poorer-paying jobs (Smedley et al., 2003). Biology and Health Disparities Many of the health disparities relate to disease that can be managed with adequate primary care and early detection. It is clear th at biologic and phenotypic differences exist among the defined racial groups in the Unite d States. Blacks suffer disproportionately from elevated blood pressure and cholesterol, as well as illnesses linked to coronary artery disease that can be treated with early intervention (Blanchard & Lurie, 2005). In addition, the combined death rate for all canc ers in 2003 continued to be 35% higher in African American men and 18% higher in A frican American women than in white men and women (ACS, 2007). Though these statis tics are clear, they track poorly with genetics (Brawley & Moore, 2006). A closed society will conserve genetic traits within that society (Brawley & Moore, 2006). This is exemplified by populations in the U.S. that were segregated on the basis of race, ethnicity, economics, or other factors (Brawley & Moore, 2006). It has
15 been advised that the majority of genetic differences correlated or associated with race should be considered familial and not racial (Brawley & Moore, 2006)because race is not a biological construct, it a social constr uct that precisely captures the impacts of racism (Jones, 2000). Race and Health Disparities Many U.S. research studies document disp arities in health status based on race. Race is a rough proxy for socioeconomic st atus, culture, and genes that captures the social classification of people in a race-conscious society as the U.S. (Jones, 2000). Jones (2000)offers a basic framework for understa nding racism and its influence on health. According to Jones (2000), institutionalized r acism comes in two forms: 1) material conditions and 2) access to pow er. Examples of material conditions include access to quality education, sound housing, gainful employ ment, appropriate me dical facilities, and a clean environment (p. 1212). Examples of access to power include differential access to information (including ones own hist ory), resources (includingwealth and organization infrastructure), and voice (inc luding voting rights, representation in government, and control of media) (Jones, 2000). Personally mediated racism is defined as prejudice and discrimination where prejudice means diffe rential assumptions about the abilitie s, motives, and intentions of others according to their race (Jones, 2000, p. 300). Personally mediated racism can be intentional and unintentional and includes acts of commission such as surprise at competence and omission such as poor or no se rvice. Internalized R acism is defined as acceptance by members of the stigmatized races of negative messages about their own abilities and intrinsic worth (Jones, 2000, p. 300) Not believing in others who look like
16 them, and not believing in themselves characterize it. According to Jones, institutionalized racism is the most funda mental of the three levels because once institutionalized racism is addressed, the other levels will cure themselves over time. Health Disparities and Cancer Racial differences have also been found in the quality and intensity of healthcare and diagnostic services for a broad range of procedures and disease areas even after adjusting for insurance status and severity of disease (Smedley et al., 2003). This is particularly important for cancer because it is best controlled by prevention through avoidance of exposures to cancer-causing agen ts and early detection (Brawley & Moore, 2006). Insurance status has emerged as a key pr edictor of the quality of care that patients receive and those with a private source of insurance generally receive a higher quality of care (Smedley et al., 2003) Racial and ethnic minoritie s are disproportionately represented in publiclyfunded sources or no h ealth insurance at a ll (Smedley et al., 2003). Therefore, white Americans with cancer are more likely than black Americans to receive optimal screening, diagnosis, a nd optimal cancer treatment once diagnosed. Colorectal Cancer and Health Disparities Colorectal cancer is of particular importa nce because it is the third leading cause of cancer-related deaths in the U.S. (ACS 2008)and the third leading cause of cancer deaths among African American me n and women (ACS, 2008).An estimated 7,120 deaths from CRC occurred in 2007 among African Americans (ACS, 2009). The higher death rates account for one-fourth of the di sparity in cancer death rates between AfricanAmerican and white women and 11% of the disparity between African American and white men (ACS, 2007). Though overall death rates from CRC have declined since 1990,
17 the reduction has been smaller in African Americans than in Whites (0.9% per year versus 1.9%) (ACS, 2007). Chen et al. ( 1997)conducted a cancer survival study and found that blacks have a poorer colon cancer su rvival rate than wh ite patients and have more advanced state disease at diagnosis. Though the exact causes of disparity are unknown, there are several factors that increase the risk of colorectal cancer including obesity, physical inactivity, cigarette smoking, a diet high in red or processed meat, and heavy alcohol consumption (ACS, 2007, p. 10). Improved preventive care may have an impact in narrowing the colon cancer incidence and survival gaps in the African American population. CRC is a unique cancer in that screening for the disease offers the potential for primary and secondary prevention (Vernon, 1997). Factors that are protective agai nst colorectal cancer include occupational or recreational physical activity, a diet high in fruits and vegetables, and colorectal cancer screening with removal of polyps (polypectom y) before they progress to cancer (ACS, 2007). Therefore it is important to develop culturally appropriate programs for African American men and women so that they can en gage in healthy behaviors that allow for prevention and early detection of colon cancer. Programs such as these will contribute to the reduction of racial and ethnic health disparities in the United States. Colorectal Cancer Screening Recommendations The American Cancer Society, the Americ an College of Radiology, and the U.S. Multi-Society Task force on Colorectal Cancer updated the CRC screening guidelines to distinguish between screening tests that primari ly detect cancer and those that are more likely to detect both cancer and ade nomatous polyps (ACS, 2008). The updated guidelines recommend men and women at average risk for CRC to begin screening at age
18 50 using one of the following preferred tests to screen for polyps and cancer: 1) flexible sigmoidoscopy every 5 years, 2) colonosco pyevery 10 years 3) double-contrast barium enema every 5 years, or 4) CT colonography (virtual colonoscopy) every 5 years (ACS, American Cancer Society., 2008; Levin et al., 2008). The following tests are primarily effective at detecting cancer alone because the opportunity for prevention is limited and not the primary goal: 1) fecal occult blood te st (FOBT) annually, and 2) Stool DNA test which currently has an uncertain test time interval. Screening at an earlier age is recommended for those with a family history of CRC including those who have a first-degree relative (FDR) with a history of colorectal cancer or polyps younger than 60 years of age, two FDRs of any age with a history of CRC, or a family history of familial adenomatous polyposis or hereditary non-polyposis colon cancer (American Academy of Family Physician (Read & Kodner, 1999). Murff et al.(2008)found that African American FDRs were less likely to undergo colonoscopy screening compared to whites with affected relatives. Additionally, in a recent study by Rubinetal.(2009), of 253 CRC patients only 120 (47.4%) knew that their first degree relatives were at increased risk for the di sease. Thirty-four point eight percent (34.8%) believed that their FDR had the same risk of CRC as the general population, and 14.2% believed that their FDRs were at a lower risk than the general population. Additionally, Caucasian patients were signif icantly more likely to know of their increased family risk than African-American patient s. Rubin et al. (2009)also reported that it remains unclear what role the CRC patients play in the communication of risk to FDRs.
19 Colorectal Cancer and Diagnosis Disclosure The literature on colorectal cancer diagnosis disclosure to first-degree relatives is sparse. However, there is analogous research that focuses on disclosure of other cancers anddisclosure of genetic risk. These genetic risk studies are limited and mainly focus on late-onset disorders such as Huntingtons disease, heredity breast/ovarian cancer, balanced translocations, and re cessive disorders such as cys tic fibrosis (Forrest et al., 2003; Julian-Reynier et al., 2000; Wagner Co stalas et al., 2003). A few studies discuss breast and prostate cancer diagnosis disclosure as a part of a study, but the focus is not on the criteria individuals useto determine whether or not to reveal a diagnosis. Genetic Risk Wagner Costalas et al. (2003)describe the results from a survey designed to assess patterns of co mmunication within families shortl y after an individual receives results of BRCA1 and BRCA2 (BRCA1/2) gene mutation cancer status. The sample consisted of 162 women who received results from BRCA1/2 genetic testing. The authors were particularly interested whether there were difficulties in communicating the results and if the patient experienced distress w ith sharing the results. Using a telephone interview questionnaire with ope n-ended questioning, it was re vealed that participants shared their results more often with their female relatives than with their male relatives. Those with positive BRCA1 or BRCA2 genes shared their results with 82 (83.7%) of their relatives. Interestingly, when asked if there was a particular relative who seemed to have difficulty understanding the test results, respondent s reported that 12.4% of their siblings had diffic ulties understanding the results compared with 1.54% of adult children (p.15). Gender was not statistically si gnificant in that an approximately equal
20 percentage of male (8.3%) a nd female (7.4%) blood relatives were reported to have had difficulty understanding the test results (p.15) (Wagner Costalas et al.,2003). The results of the Wagner Costalas et al (2003)study revealed that individuals disclose their genetic test results to their at-risk relatives and they most often share their results with their adult sisters and daughters than with their adult brothers and sons (p. 15). This study did not delve further into the reasons why men were less likely to be told. These issues should be further explored because daughters of adult brothers and sons may be at risk for inheriting the gene for breast cancer and should be informed of that risk. Additionally, the difficulties experienced by th e patients were not further explained in the study, indicating the need for further research in this area. Julian-Reynier et al. (2000)conducted a cr oss-sectional self-administered survey, to determine womens attitudes towards the family disclosure of positive breast cancer genetic testing results and to determine the predictive factors ofthe diffusion patterns observed. The women in the sa mple attended a breast cancer genetic clinic in France. Of the 398 respondents, 383 had at least one livin g first-degree relative to inform. Only 8.6% of women attending cancer genetic clinics because of breast/ovarian cancer stated they would inform none of their living first-degree relatives. The sibling was the most frequently informed blood relative before child ren, mother, and father. Women in the family were also more informed than men. Julian-Reynier et al. (2000)contend that family disease diagnosis disclosure of heredity disease areas is critical because informed patients are the key actors for disclosing genetic information to the relatives when a mutation has been identified in the family. However, the Julian-Reynier, et al. (2000)study does not further discuss the
21 impact disclosure may have on the patient or the stress that the disclosure process may pose on a patient. The Wagner Costalas et al. (2003)and th e Julian-Reynier et al. (2000)studies only involved women in their study populations due to the mostly female breast cancer patient population. It is imperativ e that disclosure in men also be explored. Hallowell et al. (2005)conducted in-depth interviewsto ex plore the way in which information about BRCA1/2 testing is communicated within the families of men who undergo genetic testing. The sample included men (n=17), thei r partners (n=8) and adult children (n=4). They focused on cases in which the father had undergone BRCA1/2 predictive testing and described the process of communication within the immediate family. It was revealed that male patients a nd their partners perceive th emselves as responsible for disclosing information about genetic testing and genetic risks to their children. The parents described three differe nt communication strategies for their disclosure to their children: 1) complete openness, 2) limited disclosure and 3) total secrecy. The adoption of the different strategies was influenced by childrens competence and life stage and pragmatic considerations (such as if the delivery of the information was to be face-toface). In families where cancer is currently an issue (relative recently diagnosed, treated or died) it may be easier fora parent to di scuss and more difficult to hide from adult children (Hallowell et al., 2005). None of the men in the Hallowell et al. (2005)study indicated that they did not want to inform their children of their cancer status, but some were unwilling to share information with their children until the test results were known. Ho wever, lone parents may face difficulties when disclosing inform ation about genetic te sting to children and
22 may need additional support fro m genetic counselors/ clinicians and at-risk children may also require extra support (Hallowell et al., 2005, p. 500). This study points to certain circumstances that may influence the ease or di fficulty of disclosure. It is important to understand the impact of disclosure on those w ho have a risk based on heredity alone, not necessarily due to a gene mutation that predisposes them and their family members to an illness. Other Cancers Gray, Fitch, Phillips, Labrecque, and Fe rgus (2000)conducted separate and simultaneous interviews (three times) with Canadian men diagnosed with prostate cancer and their spouses who were referred by urol ogists in the Toronto area. Interviews consisted of open-ended questions designed to explore me ns decisions about a prostate cancer diagnosis disclosure and ongoing medi cal situationswith others besides their spouse. Many men in the study commented that if it had been possible, they would have avoided telling anyone other than their s pouse. The main criterion for men deciding whom to tell about their prosta te cancer was their perception of the others right or need to know. Especially in the case of famil y members, there was often a felt sense of obligation to inform, expresse d in terms of providing information about possible genetic risks for other family members. A few men in the study, especially those who were younger and employed,spread the news of th eir prostate cancer widely among friends and co-workers. They told men that they s hould pay attention to their health and get tested for prostate cancer. The Gray et al. (2000)study provides im portant information about the decisionmaking criteria that men use in prostate cance r disclosure such as the others right or
23 need to know. It will be beneficial for futu re research to understand the social support factors that influence the disclosure, especially the characteristics and factors that influence those men who share thei r diagnosis widely with others. A study by Henderson, Davidson, Penne baker, Gatchel, and Baum (2002) documented and described disclosure patterns and attitudes among breast cancer patients. This study revealed some factors that may cont ribute to the degree to which breast cancer patients talk abouttheir cancer. Though not true for all patients, most wanted to and were able to talk with others about their cancer. The degree of disclosure was predicted by the participant age in which younger subjects discussed their disease significantly more than older patients. Disclosure was al so predicted by severity of di sease, with more disclosure associated with greater severity of diseas e.Out of 270 participants, 20 reported little or no disease disclosure to anyone besides thei r spouse or doctor. Approximately one-third of the extremely low disclosers wanted to keep their cancer a secret, one-third found it difficult to discuss their cancer, and half want ed to talk to someone about their cancer. According to the authors, this suggests that some breast cancerpatients have a desire for secrecy, while othersmay experience social constraints or barriers to discussion. Though this study contributes to the literature on cancer disclosure, it was a quantitative studyand did not assess more subtle, qualitative aspects of disclosu re (Henderson et al., 2002). Hilton, Emslie, Hunt, Chapple, &Ziebla nd (2009)conducted a secondary analysis of narrative interviews of 37 young people be tween the ages of 18 and 34 at diagnosis to explore how they discussed their experience of disclosing their cancer diagnosis to families, friends, and wider social networks .They found that most men and women were open about their illness and told family, frie nds, and close colleagues. However, telling
24 loved ones about their diagnosis was one of th e most difficult aspects of having cancer and patients delayed telling those they percei ved to be vulnerable. Hilton et al. (2009) found that men made connections between disclosure and their identity in a way that women did not, and found that me n were more secretive about their diagnosis. This study adds to the literature on disclosure among young adults with cancer and describes gender differences that impact disclosure. However, this study focused on multiple cancers and does not take into account the le vels of stigma associated w ith different types of cancer that affect disclosure or the impact that familial risk has on disclosure. Henderson et al. (2002)assertedthat theoreti cal and empirical wo rk suggests that inhibition of traumatic or stre ssful experiences is deleterious to health and well-being. Additionally Ballard-Reisch & Letner (2003)found that talking about cancer helps patients organize their thoughts and feelings and helps to make sense of their experience. However, Gray et al. (2000)found that th ere is no reason to suspect that it is psychologically or socially more adaptive to disclose to those in ones social network than not to disclose. When it comes to disclosing to family members with a familial or genetic risk, it is widely assumed that informing persons a bout their genetic risk or susceptibility for cancer is beneficial (d'Agincourt-Canning, 2001). It is asserted that obtaining information may encourage identified individuals to engage in cancer screening or avoid exposure to behavioral risk factors such as poor eating ha bits or a sedentary lifestyle. However, these assumptions are based on a medical model that views the individual as rational, independent, and autonomous (d'Agincourt-C anning, 2001). In fact, in a study of 368 relatives of colorectal cancer patients, Madlensky, Esplen, Gallinger, McLaughlin, &
25 Goel(2003)found that perceived susceptibility to CRC, advice from family members, and exposure to public awareness information we re not associated with screening. Murff et al. (2008)found that African Americans with multiple affected FDRs were half as likely to have undergone recommended screenin g procedures when compared to whites, even after adjusting for education, annual in come, and insurance status. In both groups, the most common reason for not participating in screening procedures was lack of recommendation from their health care provide r. This points to the need for further research to discover how African American FD Rs perceive the information they receive when a family member discloses a CRC diagnosis and how this information impacts their health behaviors. Therefore, additional research on how a patient rationalizes disclosure of diagnosis and the process of weighing the be nefits and consequences will contribute to appropriate recommendations for patients. A growing area of literature known as family secrets has the potential to contribute to continued research in this area. Family SecretsFramework According to Brown-Smith (1998), that wh ich is kept secret or private has various meanings to different families and/or to different family members (p. 24). Disease disclosure can be thought of as being a type of family secret Little research has explored the criteria that people employ when they decide to reveal information deemed personal or intimate such as a disease diagnosis. There is a growing area of social work research that discusses the effects of secrets and disclosure within families. Revealing family secrets can have importa nt personal and rela tional consequences (Vangelisti et al., 2001). Vangelisti et al. (2001)report that keep ing family secrets is often portrayed as
26 having negative consequences for individua ls and popular U.S. culture discourages family secrets. They contend that there is a broad spectrum of potential consequences that accompany the disclosure of family secrets which makes decisions about whether to reveal the secret complex. Vangelisti et al. (2001)define criteria for revealing family secrets as the prerequisites or standardspeople use to judge whether they should divulge secret information about theirfamily to others. Th e authors reviewed preliminary ideas about the criteria individuals may use when they c onsider whether to reveal a family secret. They found that people may reveal secrets wh en: 1) the secrets threaten their own wellbeing both physically and psychologically; 2) the anticipated response from a confidant is positive; 3) the communication context creat es an opening or an opportunity for disclosure; 4) the impact of the disclosure on family members is positive such as receiving social support; and 5) when the disc losure itself brings some reward such as social validation. A limitation of the definition of criteria fo r revealing family secrets proposed by Vangelisti et al. (2001)is that it is limited to secrets kept by the entire family from outsiders (whole family secrets). However, the findings point to the complexity involved in disclosing secrets. Additional research s hould be conducted in orde r to investigate if the criteria used are relevant to informati on about ones self kept from other family members and if the criteria is dependent on the type of secret such as if the criteria is applicable to someone interested in disclosing a disease diagnosis to family members. The proposed study is innovative in that the Va ngelisti et al. (2001)criteria have not been used to investigate a cancer diagnosis in general and a CRC diagnosis in particular.
27 However, the criteria for revealing family secrets are applicable to the current study because it will contextualize CRC disclosure as a secrecy issue in the literature. Afifi et al.(2005)conducted a study with 171 families (629 famil y members) to determine the number and type of family me mbers who were withholding secrets from one another. They used a quantitative survey and followed up with an in-depth interview. This questionnaire design wa s inappropriate because ma ny questions were left unanswered because there was a lack of in-d epth responses. The researchers found that individuals refrained from revealing secrets for fear of how their family member would respond, which was based upon aggr essive reactions to prior revelations to this person. Conversely, the unpredictability of a reaction was also a factor. Communication efficacy played a role in that people continuedto conceal negative secrets from aggressive family members whether or not they felt they had the ability to communicate the secret. If past experiences were consistently negative, i ndividuals felt as though there was no way to communicate the secret in such a way that it could produce a positive response and they felt as if they had little or no ability to af fect the interaction. Potential moderators included age, rigidity in a family members values, time that a participant spentwith their family members, and the longevity of the impact of the secret. The participants in this study were largely comprised of white, middle-class families and may not be representative of the diversity of families in the U.S. The current study will fill this gap by focusing on the African American family. The Vangelisti et al. (2001)and Afifi et al.(2005)studies are specific to secrets about family relationships including secrets th at go against cultural norms or those that would be considered immoral. In addition, the ac tual secrets of the participants were not
28 fully described in these studies making it diffi cult to generalize the results of these studies to a patient population who may want to reveal private information su ch as a colorectal cancer disease diagnosis. Social Support Framework Social support has been shown to be asso ciated with increased cancer screening. However, these studies focused on general cate gories of support. Few studies have made finer distinction in the type of social s upport and providers of that support (Gili, Roca, Ferrer, Obrador, & Cabeza, 2006). Gili, Roca, Ferrer, Obrador, & Cabeza(2006) used the concept of perceived social support to identifyfactors related to CRC screening adherence in a sample of siblings of CRC patients in Spain. The results found that adherents to CRC screening perceive a greater level of social support. However, this study did not examine the family as a source of support, only friends, work colleagues, and health staff. Honda and Kagawa-Singer (2006)examined CRC screening adherence among a sample of Japanese Americans aged 50 a nd over. They found that emotional family support, but not the size of the networks, was indirectly related to adherence. However, this study was not focused on CRC patients or their family members who wereat a higher risk for developing the disease. Madlensky, Esplen, Gallinger, McLaughli n, & Goel (2003)examined relatives of CRC patients to determine whether decisions regarding CRC screening by relatives were influenced by social interactions with famil y members, friends, and physicians or public awareness campaigns. The quantitative study focused on advice giving and encouragement between at-risk relatives and their families, healthcare providers, and
29 social contact. Overall encouragement to be screened from family members was examined at the family level. The results indicated that screeners had more affected relatives, were more likely to discuss CRC screening after diagnosis in the family, and were more often encouraged by relatives than non-screeners. Though this study provided insight on the screening behaviors of FDRs, th is study was based in Canada and did not include African Americans. In addition, the st udy did not include details on the type of encouragement or support from CRC patients that influenced FDR screening. Kinney, Bloor, Martin, andSandler(2005) examined the relationship between social networks and CRC screening among blacks and whites in North Carolina selected from a random sample in the general populati on. They examined relationships between both structural (number of tie s and frequency of contact) and functional (emotional or instrumental support) aspects of social ties a nd utilization of colorectal cancer screening tests. They found that those who were most so cially connected were more likely to report recent use of CRC screening. Neither emotiona l nor instrumental support was associated with screening behavior, suggesting that st ructural (number of ties and frequency of contact with ties) rather th an functional (offering emoti onal or instrumental support) aspects of social ties may be important in influencing CRC screening behavior. This study points to the fact that these social s upport characteristics should be further explored using a qualitative methodology to determine if functional aspects of support are related to screening among FDRs of CRC survivors. Summary None of the studies reviewed thus far were focused on African Americans alone, or were specific to patients and FDRs. In fact the majority of the studies were conducted
30 with populations outside of the United States (Forrest et al., 2003; Gray et al., 2000; Hallowell et al., 2005; Honda & Kagawa-Sin ger, 2006; Julian-Reynier et al., 2000). Therefore, research specific to colorectal cancer and African Americans should be further explored, taking into account the numerous social support and decision-making factors that impact CRC disclosure to family members who are at risk of developing the disease. This is important for developing appropr iate recommendations a nd health promotion programs that result in reducing the CRC health disparity. The currentstudy will contribute to the literature by using a qualitative methodology to more fully examine the mechan isms of social support and criteria used during the CRC disclosure process. It will also examine disclosure from both the patients and relatives perspective and focus exclusiv ely on African Americans, the group with the highest rates of CRC in the U.S. The findings will contribute to an understanding of the disclosure decision-making pattern s among African Americans and identify appropriate recommendations for disease disclosure to a first-degree relative. Ultimately, this study will contribute to the development of culturally relevant, interventions that contribute to narrowing the CRC health disparity among African Americans.
31 ChapterThree Research Methods The purpose of this study was to explore the role of perceived social support and the criteria for revealing family secrets on disease disclosure among African American male and female colorectal cancer survivors and their family members. This study used the social support and family secrets frame works to examine how family support and closeness to the patient impact disclosure to first-degree relatives (FDR) and how this disclosure influences CRC screening activities in African American families. This exploratory study attempted to answer the re search questions: 1) What factors influence patients decisions to reveal a CRC diagnosis to family members?; 2) What decisionmaking criteria do patients use to help them decide to disclose or not disclose a CRC diagnosis (including whether disclosure:a) threatens the patients well-being; b) the anticipated response from a confidant is pos itive; c) the communica tion context creates an opening as in finding an opportunity for di sclosure; d) the impact of the disclosure on family members is positive such as receiving social support; and e) when the disclosure itself brings some reward such as social validation)?; 3) What roles do emotional, instrumental, informational, and appraisal types of social support play in a patients decision todisclose his/herdiagnosis to an FDR?; 4) How do FDRs perceive the information they received about the patients diagnosis?; 5) How do diagnosed patients influence the sc reening behaviors of their FDRs through emotional support, instrumental support, in formational support, and appraisal support?
32 This dissertation research study was a component ina larger study conducted at Moffitt Cancer Center (Principal Investigator: Dr. Clement K. Gwede; USF IRB #106449). The qualitative sub study instrument wa s administered prior to the instrument battery of the larger study. This two-phase study employed a qualitative research approach which included: 1) in-depth, fa ce-to-face semi-structured, interviews with patients in phase one and 2) semi-structured telephone inte rviews with FDRs in the second phase (See concept model in Appendix A). An in-depth interview is an openended, discovery-oriented method (Guion, 2001). The goal of the interview is to deep ly explore the respondent's point of view, feelings and perspectives (Guion, 2001). This is appropriate when there is a need to understand individual decision-making (Gui on, 2001). In this study, individual interviews were face-to-face and semi-stru ctured: an initial set of questions were developed to guide the researcher and ensure key topics were covere d in sufficient depth to answer the research questions, but the re searcher changed the order, added questions, and probed for deepermeanings, as appropriate. Face-to-face interviews were used with patients in this study becausethey typically have the highest response rates and greatest face validity(Neuman, 2003). Telephone interviews were c onducted with FDRs of patients in this study. In a telephone interview, the interv iewer calls a respondent at home, asks questions, and records answers (Neuman, 2003). The telephon e interview is a popularmethod because ninety-five percent(95%)of the populati on can be reached by telephone (Neuman, 2003). The telephone interview is a flexible me thod with most ofthe strengths of face-toface interview andit is half the cost (Neuman, 2003).
33 The participants for this study were patients diagnosed with and treated for colorectal cancer and their first degree relatives. Specific details regarding the participants, research design, data collection instruments, a nd procedures are presented in this chapter. Sample A two-phase sampling methodology was used for this study in order to reach the populations of interest. The prima ry sample frame was the cancer registry database at St. Josephs Hospital located in Tampa, Florida. The secondary sample frame was the cancer registry database at Moffitt Cancer Center located in Tampa, FL. The secondary sample frame was employed to supplement the primary sample frame in order to recruit an adequate number of study participants. St. Josephs HospitalCancer Institute St. Josephs Hospital (SJH)is affiliated w ith the H. Lee Moffitt Cancer Center and Research Institute (HLMCC), located in Tampa, Florida, which allows SJH to further expand its care so that patients are receiving the most up-to-date, advanced cancer care available as well as access to nationally-recognized clinical trials. Theaffiliation reinforces the concept of delivering primary cancer care in their highly regarded hospital while tapping the expertise and resources of academic researchers to assist in the treatment of rare and complicated cancers(SJH, 2010). The comprehensive cancer registry at St. Josephs Hospitals Cancer Institute (SJHCI)includes local and national data on individuals diagnosed with cancer. The Cancer Registry is an integral part of SJHC I and aids the institute in education, research, and lifetime patient follow up. The primary function of th e Cancer Registry is to provide
34 continuum data management services under the leadership and support of the Cancer Committee. Cancer data collection is available to the medical staff for special studies, audits and research. SJHCI in itiated data collection for the Cancer Registry in 1976 with over 40,000 accumulative cases. The registry reference year was changed to 1990 for better control of maintaining current fo llow-up and treatment on over 22,000 patients. Lifetime follow-up for former patients is a v ital component of the cancer program. The registry utilizes the Electroni c Registry System (ERS)forco llection, analysis and quality improvement. Advantages. When the study began, the researcherwas a HLMCC employee. As such, the researcher had access to thepatients in the SJHCI cancer registry. The cancer registry representative first gave the researcher permission to contact a patient to ensure that the patient met the minimum eligibility requirements. This affiliation with SJHCI gave the study more credibility among potential participants because his/her treating hospital recommended him/her for the study. The procedures for obtaining patient cont act information were simple, requiring contact with a cancer registry representative. As an HLMCC employee, the researcher had the ability to contact the cancer registry representative face-to-face or through other means and received a timely response. Disadvantages. SJHCI has a significantly smalle r amount of African American cancer patients compared to white patients. However, given the number of African American patients seen fo r colorectal cancer in 2005-2008, the sampling frame was determined to be suitable for this research study.
35 H. Lee Moffitt Cancer Center The cancer registry database at the H. Lee Moffitt Cancer Center (HLMCC) includesover 80,000 analytic, non-analytic, hi storical, and autopsy cases accessioned since Moffitt began accepting patients in 1986 (HLMCC, 2007).The database includes all patients with active cancer and/or those receiving therapy for active cancer whose care is managed at HLMCC. Patient s entered into the database are followed for life in order to determine treatment ou tcomes and survival (HLMCC, 2007). The HLMCC sample frame was determined to be appropriate because in 2006 alone, there were over 221 patients treated for colorectal cancer at the facility. The Moffitt Cancer Registry follows guide lines set by the Florida Department of Health and the American College of Surgeons (ACOS) to determine patient eligibility for inclusion in the Cancer Registry database Once the case-finding process is completed, and a patient is determined to be an eligible case, the patient s information is abstracted by a Certified Tumor Registrar (CTR). The Cancer Registry collects information on demographics, history of cancer, diagnosis, stage, treatment, recurrence, and survival (HLMCC, 2007). As a requirement of Florida statute 385.202, each patient admitted for the treatment of cancer is reported by HLMCCto the Flor ida Department of Health. Advantages. At the time of the study, the researcher was a HLMCC employee. As such, the researcher had access to the patients in the registry and their treating physicians. When possible, thetreating ph ysicians recommended patients for the study. In this case, the physician recommendation gave the study more credibility among potential participants given that their treating physician recommended them for the study.
36 The procedures for obtaining patient cont act information were simple, requiring contact with a cancer registry representative. As an HLMCC employee, the researcher had the ability to contact this person face-t o-face or through other means and received a timely response. Disadvantages. Historically, the racial and et hnic diversity of the patient population at the HLMCC has been limited, with the majority of patients being white. Though two patients were recruited from this sample,this sampling frame did not have an adequate number of African American patients to answer the research questions, and the majority of patients we re recruited from the primary source described above. Eligibility Criteria The sampling plan represented a combination of the pre-determined variables and themesof interest: number of months/years since treatment and living FDRs. Eligible patients included male and female adults ag ed eighteen and older who hadbeen treated with definitive surgery for localized or locally advanced CRC in the past five years. After obtaining names from the cancer registry based on the first level of eligibility, the following criteria had to be met: 1) patientreceived treatment with curative intent; 2) patientwassix months to five years post initial definitive treatment; 3) patienthadat least one living adult sibling or adult biol ogical child, and 4)patientwas not undergoing active treatment during enrollment. Those individuals outside of these guidelines were excluded from the study. Eligible FDRs were those age 18 years andolder, with no personal history of colorectal cancer.
37 Recruiting Participants Patients. A list of potential patient participants including contact information was generated from the sampling frames described ab ove. The director of the SJHCI sent an introductory letter to each potential participant using SJ HCI letterhead. This letter explained that researchers from HLMCC woul d contact them about participating in a research study. Approximately two weeks later, the researcher sent a letter with specific details about study participation. Included in the letter was a telephone number for interested survivors to call for additional information and to enroll in the study. Those who did not call back to decline participa tion were contacted by the researcher to determine interest and potential eligibility. Those who declined to participate were not contacted again. The researcher documented participation rates including ineligibility and refusal for each potential participant by entering the information intoa Microsoft Excel file stored on a secure database. Potential participants were contacted by the means they indicated as preferred (physical mail, electronic mail, & telephone). Du ring this contact, potential participants were screened for a second levelof eligibility (information related to the date of last diagnosis and time of last treatment). The men and women who met the eligibility requirements and agreed to participate were contacted to schedule a date and time to participate in the in-depth face-to-face interv iews at a community location of their choice (e.g., residence, library, local restaurant, booksto re etc.). Participants received a reminder phone call or letter prior to th e scheduled interview time. Pr ior to participation in the study, participants were asked to provide informed consent for the study and gave
38 permission to take notes and record the interview. At the end of the interview the handwritten notes were used to validate responses. First-degree relatives. As part of the eligibilitycriteria, patients recommended one or more first-degree relatives aged 18 and over to complete a telephone interview. Those relatives were contacted by telephone to determine eligibility. Those relatives who met the eligibility requirements and agreed to participate we re scheduled for a telephone interview. Prior to the interview, the researcher mailed an informed consent document along with a self-addressed postage paid envel ope that was to be signed and returned. If an informed consent document was not return ed by the time of the scheduled telephone interview, the researcher obtained oral c onsent from the participant. This approach allowed for the flexible scheduling of the telephone interviews given that many FDRs preferred to schedule the interview prior to the researcher receiving the signed informed consent. Participants received a reminder phone call and letter sent through the U.S. mail prior to the interview. Token of Appreciation Patients and FDRs were given a $30 money order to thank them for participating in the study. Once their signed informed consent document was received, a money order and a letter of appreciation were mailed to the participant. Selection and Sample Size Sandelowski (1995)notedthat a sample size of ten may be adequate for certain kinds of homogeneous or critical case sa mpling and Guest, Bunce,and Johnson(2006) proposedthat a sample of twelve may be adequate. Qualitativ eresearch typically involves purposeful non-probability sampling aimed to develop a deep understanding
39 through information-rich cases (Sande lowski, 1995).Although not statistically representative, it is informationally representative in that data were obtained from persons who have direct and personal knowledge ofsome event that they are able and willing to communicate to others (Sandelowski, 1995, p. 180). Using a purposive non-probability samplin g strategy, the researcher conducted sixteen individual interviews with CRC patients (4 men and 12women) who were six months to five years post-treatment for a res ponse rate of 39%. Each patient was asked to refer one or more FDRs to co mplete a telephone inte rview. From this recruitment,sixteen FDRs (3 menand 13 women) co mpleted telephone interviews for the study for a response rate of 80%. The total sample size for patients and FDRs in this study was 32participants Figure 1 shows total eligible and enrolle d participants and their reasons for nonparticipation.
41 Instrument Face-to-face and telephone interview protocol. The investigator applied an adapted version of the social support and fa mily secrets frameworks to structure the drafts of face-to-face and telephone intervie w guides. According to House (1981)social support is the functional conten t of relationships which can be categorized along four basic types of support 1) emotional support; 2) instrumental suppor t; 3) informational support; and 4) appraisal support. According to the Vangelisti et al. (2001)family secret framework, people may reveal secrets when: 1) the secrets threaten their own well-being both physical and psychological; 2) the anticip ated response from a confidant is positive; 3) the communication context cr eates an opening or an opportunity for disclosure; 4) the impact of the disclosure on fa mily members is positive such as receiving social support; and 5) when the disclosure itself brings some reward such as social validation. Tables 1 and 2show how constructs from each framework were used by the researcher to develop the questions used in the drafts of the interview guides. In order to provide the evidence for the tr ustworthiness of the final instrument, a consensus process was employed to finalize the instrument drafts (Sandelowski, 1995). A panel of experts (investigators dissertation committee) indepe ndently arranged all survey items developed by the inves tigator into theoretically sound categories. This sorting exercise aimed to ensure that each interview question clearly represented the intended theoretical construct. After consensus was re ached, the final instruments were pretested with four volunteers (one male and one female CR C patient and one ma le and one female FDR of a CRC patient). Participants involved in the pretestingwere not enrolled in the
42 actual study and the information they provided was not analyzed for the results of this study.
45 The guides were developed based on a lite rature review of previous studies on disease diagnosis disclosure and with studies that incorporated social support and family secret frameworks, as well as the expertise of advisors and mentor s. Basedon data from the pilot test and additional feedback from advisors and mentors, the qualitative interview guides were revised and modified. See Appendix B for final interview guides. The semi-structured in-depth face-to-face interviews with patients lasted 20-30 minutes and the semi-structured telephone inte rviews with FDRslasted 15-30 minutes. Data Management Data werecollected using in-depth, in pe rson interviews with a semi-structured interview protocol. The interviews were reco rded using a digital voice recorder that was saved as an audio file. To ensure accurate recordings of the participants responses, all equipment was tested immediately before each interview. Back-up equipment was also present at each interview. The saved audio f ile was sent to a prof essional transcriber in order to prepare the written transcripts. All data werestored in the researchers password secured computer and locked file cabinets. Only personnel working with the study had access to the computer and file cabinets a nd all persons working with the study were required to sign confidentiality statements. In formed consent forms were also stored in a locked file cabinet, in a separate f ile, away from interview transcripts. Data Analysis The final verbatim transcriptions were formatted into an electronic Microsoft Worddocument. Interview transcripts were analyzed using Atlas.tisoftware. Once an interview was completed,the electronic data file was sent to a professional transcriber for transcription. The data analysis began as s oon as the transcripts were returned to the
46 researcher. The researcher employed the constant comparativemethod of qualitative analysis developed byGlaser (1965). This method consisted of:1) comparing cases applicable to each content category, 2) integrating categories, and 3) delimiting the theory. The researcher reviewed the data and developed a priori codes that were specific and tied to the research questions and theoretical framework. While coding a case for a category, the researcher compared it with the previous cases coded in the same category (Glaser, 1965). For example, as the researcher coded a case in which a patient expected instrumental support from an FDR, she then compared this case with other cases previously coded in the same category before further coding (Glaser, 1965). The constant comparison of the interview text provided co mmon themes regarding disease disclosure to first-degree relatives based on the indivi dual various types of social support and the criteria used to reveal secrets. During this process,a codebook was developed to operationalize and define each of the themes. After review of the first set of common themes and the development of the initial codebook, the researcher employed a double codi ng method to be used for the final two steps of the constant comparative method. Half of the patient transcri pts and half of the FDR transcripts were randomly selected to be coded by a second coder. The second coder for the patient transcriptsholds a Master of P ublic Health degree and is a former research assistant for the parent study. The second code r for the FDR transcripts holds a Master of Public Health degree and is a current doctoral student at a college of public health. Both codersare experienced in qualitative research coding. The main focus of the axial coding was to examine the initial codes and determine the
47 causesand consequences, strategies and process that cluster together while identifying sub-themes (Neuman, 2003). This process help ed the researcher determine which themes to discard and which themes to examine further (Neuman, 2003). The secondarycoders assisted with this process. During this process, the codebook was revised in order to update the code categories from the first open coding pass. The dialogue between the researcher and second coder helped to inform the revised codebook. This was especially useful in areas where the codes were initially too broad. For example, an initial code of informational support was refined into the sub-code of informational support for familial risk. Finally, delimiting the theory, also known as selective coding was used as the final coding step. As the theory developed, th is step reduced the data findings. Using the updated codebook, the researcherand secondary coderslooked selectively for cases that illustrated themes and made comparisons and contrasts after all of the data collection was complete (Neuman, 2003). This allowed for co ding according to the boundaries of the researchers theory (Glaser, 1965). Use of Atlas.tiSoftware Data management and analysis were supported by the use of Atlas.ti v6, qualitativedata analysis software. Creswell (2007)describes Atla s.ti as a PC, Windowsbased program that enables researchers to orga nize their text, graphic, audio, and visual data files into a project file called a Hermeunetic Unit (HU). An HU can also be used to organize coding, memos, and findings associat ed with these files. In addition, Atlas.ti also has search features and query tools that allow the researcher to rapidly search, retrieve, and browse a ll data segments and notes relevant to an idea (Creswell, 2007).
48 Patient and FDR Analysis. For this study, two HUs were created: one HU was created for patients and the other for first-de gree relatives. The codebook and transcripts were uploaded to their corresponding Atlas.ti HUs in order to manage and organize the data. After the hand-coding of each transcript was complete and agreement was reached between the researcher and secondary coders, all coders were responsible for inserting their information into their respective HU. In order to do this, Atlas.ti was used to select sections in the transcript text and assign c odes via a code list comprised of the previously uploaded codebook. After this process was complete, an output file was created from each individual HU. These outputs contai ned the quotations and codes for each participant and can be exported to SPSS, HTML, XML, and CSV. The outputs can also be saved as printable RTF files that can be opened with Microsoft Word. These outputs were analyzed to complete the patient and FDR results section. Family Group Comparison. In order to compare the responses of the patients with two or more family members who par ticipated, the Family Manager Tool within Atlas.ti was used. The Family Manager allows the researcher to categorize each transcript into groups based on the intentions of the analysis. For this study, the Family Manager was used in the first-degree relative HU to place relatives of a given patient together. For example, the patient with th e ID PAT 555 has two relatives a sister (FDR 556) and a son (FDR 557). The two rela tives were placed in the same group given the label PAT 555. The researcher is then able to export a file that contains the quotations for a given family organized by participant ID and codes. The Family Manager Tool was not used in the patient HU. Instead, a file for each patient containing both codes and quotations was exported and printed discre tely. This enabled the
49 researcher to compare each patient output juxtaposedto its corresponding first-degree relative output containing both codes and quotations for all fi rst-degree relatives within that family. These two outputs were analyz ed and used to complete the family group comparison in the results section.
50 ChapterFour Results This chapter presents the results of the da ta analysis. As explained in Chapters I and II, the Family Secrets Framework and th e Social Support Framework serve as the guiding theoretical frameworks to understand the information collected inthe study. The analysis was conducted with the goal of answ ering the research questions for this study: 1) What factors influence patients decisions to reveal a CRC diagnosis to family members? 2) What decision-making criteria do patients use to help them decide to disclose or not disclose a CRC diagnosis; including a) whether disclosure threatens the patients well-being; b) the anticipated response from a confidant is positive; c) the communication context creates an opening as in finding an opportunityfor disclosure; d) the impact of the disclosure on family members is positive such as receiving social support; e) when the disclo sure itself brings some reward such as social validation. 3) What rolesdoemotional, instrumental, informational, and appraisal types of social support play in a patients decision to disclose his/herdiagnosis to an FDR? 4) How do FDRs perceive the informa tion they received about the patients diagnosis?
51 5) How do diagnosed patients influence th e screening behaviors of their FDRs through emotional support, instrumental support, informational support, and appraisal support? Data was obtained through face-to-face semi-structured in-depth interviews with patients, and tele phone interviews withfirst-degree relatives. Transcriptsof the interviews were analyzed in two ways: first by emerging themes that became evident by topic area and second by the theoretical framew orks used to inform the design of the study. Data were analyzed using the ATLAS.ti 6.0 software. In addition to themes that emerged from the analyses, quotations are provi ded to illustrate the perspective of the interviewed participant. The results are presented in three sections. Section I describes the patient sample and reports the qualitative results from the patient interviews. Section II describes the first-degree relative sample and reports the qualitative results of the first-degree relative interviews. Section III is an analysis of the five families in the study (those patients who had two or more family members who participated in the study). This analysis is a sideby-side comparison of the patient responses and the related FDR que stions. A summary of key findings concludes the chapter.
52 SectionI: Patients Age, marital status, and health insurance. Thepatient sample consisted of 16 adults: 4 men and 12 women who were diagnosed with colorectal cancer within the past 5 years (2004-2009). Ages of the participants in the total patient sa mple ranged from 27-80 years, with a mean age of 63 and a median age of 64. With regard to marital status, approximately 50% of the to tal sample reported being married, 12.5% were divorced, 25% were widowed, 6.3% were separated and another 6.3% ha d never been married (See Table 3). Approximately 87.5% of partic ipants indicated they had health insurance, with 12.5% indicating they had none. More than ha lf (56.3%) reported participation in the Medicare program, 31.3% had private health insurance. Social economic status. In examining the social economic status (SES) of the patient participants, includ ing education, employment status, and annual household income, the majority of the participants had at least a high school education (Table 4). One person preferred not to answer the questi on about education, four of the participants were college graduates, two ha d some college or technical school, five were high school graduates, two completed some high school, and another two completed some elementary school. Half of the patients were retired, five were employed for wages, one was out of work for more than one year, another person was out of work for less than one year, and one was unable to work. Participants annual househol d income ranged from less than $10,000 per year to greater than 100,000. Four participants re ported incomesof less than $10,000, five reported making $10,000-$25,000, two re ported incomes of $25,001-$35,000, one
53 indicated an annual income of $35,001-$50,000, two reported incomes of $50,001$75,000,andone participant reported making over $100,000. One participant preferred not to answer the question about income.
54 Table3:Sex, Age Marital Status, a nd Health Insurance (Patients) (N=16) VariableN% Sex Male425 Female1275 Age 20-2916.3 30-3900 40-4916.3 50-59425 60-69531.3 70-79318.8 80-89212.5 Marital Status Married850 Divorced212.5 Widowed425 Separated16.3 Never married16.3 Health Insurance Yes1487.5 No212.5 Health Insurance Type Medicare956.3 Private531.3 N/A212.5
55 Table 4:Education, Employment Status, & Annual Household Income (Patients) (N=16) VariableN% Education Completed Elementary school212.5 Some high school212.5 High school graduate531.2 Some collegeor tech school212.5 College graduate425 Prefer not to answer16.3 Employment Status Employed for wages531.3 Out of work for more than one year16.3 Out of work for less than one year16.3 Retired850 Unable to Work16.3 Annual Household Income Less than $10,000425 $10,000-$25,000531.3 $25,001-$35,000212.5 $35,001-$50,00016.3 $50,001-$75,000212.5 $100,001 or more16.3 Prefer not to answer16.3
56 In-Depth Interviews Semi-structured in-depth interviews were conducted from May 2009-August 2009. The interviews were conducted with the us e of an interview guide, which included a list of questions grouped by topic and domain. Interviews were conducted with a preformulated interview guide, but answers to those questions were allowed to be fully expanded at the discretion of the interviewer and interviewee, and c ould be enhanced by probes. All sixteen of the interviews were completed face-to-face. Fourteen were conducted at the homes of the patients, one was conducted at a local restaurant, and one was conducted at a local hospital. Each inte rview lasted approximately 20-30 minutes. Patient Individual Interview Findings General colorectal cancer diagnosis experience. The first part of the interview focused on thepatients experience with learning of his/herdiagnosis. In answer to the first question, Can you think back to when you were first diagnosed with Colorectal Cancer and tell me about your experience, most participants answered in the context of when they first experienced symptoms that caused them to seek medical attention. Examples of the responses are below: Well I guess I was a bit prepared for the diagnosis because I started having, I went to the doctor with symptoms and I had been online, just kindof looking up the symptoms, so there was kind of red flag s all over the place in terms of you know what those symptoms occurring, you that if its cancer that was said to me in advance.(51 year old woman) I was telling her one day that when I drank water, you know my stomach hurt. She said well, why dont you go have a colonoscopy done? So Im thinking okay, well this aint going to hurt anything.(59 year old male) So in the beginning, I saw when I cleaned myself and I saw the blood, of course I panicked, of course, a nd called Dr. XXX right away. I had constipation
57 constantly, you know but that was the first time Id seen the blood, so then I said Uh-oh, thats not good! (89 year old female) Experiences of faith and spirituality were present among other participants and were included as a major part of their diagnosis experience: So I struggled and prayed, and strugg led and prayed. (54 year old female) The only thing I can do myself is pray, and hope for the Lords favor, because he is a good God. He will take care of you. (63 year old female) my daughter is a strong believer also, so she was telling my husband that, Dont worry, God has this all in his hands. And you know, and they prayed about it, and we prayed about it, and one of my daughter's boyfriends, he prayed. Hes a minister. He prayed. He came in the hospital and prayedwith us, and we read scriptures, and the normal stuff. (65 year old female) The next question asked the patient, What we re the first three things that came to mind whenyou first learned about your diagnos is? The majority of patients focused on one major thing that came to mind. Two patient s talked about the children that were in their care and about making provisions for th em before beginning treatment. Another patient was worried about whet her the cancer had spread. The topics of death and dying were mentioned quite frequently. Some patient thoughts included: I did cry, real hard, and I wanted to go home right then because I said if Im going to die, I want to die at home where my husband died at. (54 year old female) The first thing come to my mind, tell the doctor to go out of the room so I can deal with my oncoming death. (48 year old female) But, you know, that was my worst day, a nd all the day long all I couldthink of was, you know, Im not going to see my kids have children, you know, Im not going to live, all the negative stuff. (54 year old female) In addition to the topic of death, patients ex pressed a strong desire to pray and to use their faith and spirituality to deal with the challenging road ahead. Patients did not mention religion or a belief in a particular denomination of Christianity. Though some
58 patients referred to a pastor, mo st expressions of faith and spirituality were general and focused onhaving a relationship with a higher power. It kind of upset me a little bit, but I learned to pray, to deal with it, and I talked to my pastor and my pastor kept coming out there praying for me. (54 year old female) First, pray. Prayer came to my mind immediately at a Stage 4. In fact, even before Stage 4, prayer came to my mind every day of my life. (48 year old female) So I just started talking to the Lord and after that really, I really didnt have time for anything to come to mind (64 year old female) Disclosure experience. After allowing the patients to get comfortable talking about their diagnosis experience, the next pa rt of the interview focused on the patients experiences with disclosing their colorectal diagnosis with their family members. Patients were asked which first-degree relatives they decided to tell, the reason for telling, and the results of telling. Patie nts reported that they disclosed th eir diagnosis to their spouses and a range of FDRs including parents, children, and siblings. Many also told second-degree relatives (including aunts, uncles, nieces, ne phews, and cousins) along with co-workers and friends. A few patients were unable to tell family members prior to surgery, due to the lack of a definitive diagnosis until surg ery. Inthese cases, the family members found out about the diagnosis at the same time as the patient: We all found out exactly about the colo rectal cancer together from the doctor when they did the surgery. (80 year old female) When they admitted me, my other daughter came to see what was going on with me, and thats when he (the physician) go t a chance to talk to her. (65 year old female) Because, when I found out myself and I was talking with my husband and the doctors, we asked a lot of questions, and some of my children were there, my daughters were there. (60 year old female)
59 There was not a patient interviewed who i ndicated that he/shedid not inform at least one family member about their colorect al cancer diagnosis. However, two patients admitted that they delayed telling certain family members: Yeah, my daughter, my son, my husband, my sons thats here because I have a lot out of town and all over the world I didn t tell all of them right away because it wasnt time, and I wasnt in no position. (65 year old female) I really didnt discuss it with him until I went to see my oncologist, you know Dr. XXX, the surgeon, to really know what was what. And I really didnt know nothing until I actually had the surgery and they did the biopsy to see that it spread And then thats when I really got into details and told my mom, my family. (63 year old female) Patient responses to the question, What was the decision of who to tell like for you? focused on the ease or difficulty associ ated with disclosing the news to family members. Eleven (n=11) said that it was easy to disclose and three (n=3) admitted that it was difficult to disclose. The ot her two patients said that one particular family member told the others on their behalf and there wa s no need to personally disclose to anyother family member. Some of the reasons patients had for sayi ng that it was easy to disclose are reported below: No, no. It wasnt hard, no. I guess it would have been if she had not been a doctor, you know. (89 year old female) No, it wasnt hard. I just spoke out, told them what was going on and everything. (70 year old male) It was pretty easy. I told them. Well, if I died they knew, if I lived, then they understand me. (60 ye ar old female) For some patients, the decision to tellwas described as difficult; however, patients felt that it was important to tell family members because they needed to know:
60 Yeah, so it was very-that was very overwhelming, and then having to try to communicate, like I talked to my mother, you know, just trying to communicate the, you know, the extent of what they are saying, and you know, so thats when it really got scary for me (51 year old female) Well, it wasnt easy for me to tell. I just did it. You know, its just something that had to be done,you know. (54 year old female) Well, I feel like if youve got children, no matter what the situation is, they need to know. You know, thats something you dont hold back, you know. So, I went over and told them, so they was, you know. (48 year old female) Other patients considered the potential negativ e consequences of not disclosing as a reason for telling family members about their diagnosis: Because they going to find out anyway. If I dont tell them, and I go down, they still going to find out But if you lie, then Ive got to go all back over this thing, and straighten it out and a ll. (76 year old male) Let them know because you dont know, ma ybe you wait a little bit too late and you know someone might not be taking it good, so you just wind up getting lost if you dont do it. (75 year old female) Besides telling family members because they werein frequent contact with them, most patients said that the major reason for disclosure was to make their first-degree relatives aware of the FDRsrisk for the disease: You cannot hide it from them, and if the trut h of the history, now Im the first one with a colorectal history in my family. If you hide it from them, it is not part of the success plan in the future; it is a part of your family now. And you want to be able to watch out for it, you want that me mory to be at my mothers age, in her forties, she was diagnosed with a stage 4 colorectal cancer, so that if there is any symptoms in the future, whether they think its just a little pain, and even on their birthday, early detection is a way that I teach those children. (48 year old female) Because I wanted them to get tested and wanted to make sure that everybody in the family, you know, know whether its cancer in the family because my father died of cancer about ten years ago, and so I wanted everybody to get tested and everybody to take care of their own selves on that side because my father passed from cancer. (66 year old male) because one of the things that I stumbled across while I was researching online was some statistics on African Americans and the fact that they tend to present
61 well advanced, and so so me of the recommendations were even African Americans are screened, you know, up to te n years earlier than 50, and so I wasnt 50 at the time, and so, and I was reading where your siblings, everything, need to be screened within 10 years of your ag e that you were diagnosed (51 year old female) In response to the question, How did it go when you told him/her?patients said they consideredtheir family members feelings and minimized the seriousness of colorectal cancer as much as possible in an attempt to reduce the family members concern. So that wasnt-so then, when I did go, I did find out, and I said, Dr. XXX said he thinks he saw something there and weve got to take care of it right away, you know and so, you know I tried to put it as easy as if its no big deal, you know. (89 year old female) Well, just in case if I died or something, you know they would know what I died with, you know. That if I had to take tr eatment, they would know that I had to take treatments, so they would understand, I dont want them worrying about it. (60 year old female) But it was important to tell them as soon as the anger, the first couple of days, was set into reality. It was important to dr aw them near and tell them, Its serious. But were okay I decided to minimize cancer word from the beginning. (48 year old female) Communication context. The next part of the interv iew attempted to understand the communication context of the disclosure. The patients were aske d to describe when they felt it was an appropriate time to reveal their diagnosis and the setting of the disclosure. This was done to understand when the patients felt there was an appropriate opportunity for disclosure. Five (n=5) patie nts told their family members about their diagnosis over the telephone.Ten (n=10) patie nts told family members face-to-face. One patient said that she told some family me mbers face-to-face and others over the phone. Some responses from those who told their relatives over the telephone are below:
62 I gave a call to my daughter and she lives in Dallas, and I told her what he had found. (89 year old female) Just me and my brother. Yeah, I told h im about it. Itold him I said well, when I found out about it I just called and told him. I said you know, I got cancer, Ive got to have an operation. (59 year old male) I think I called my mom that, later that, yeah, I think I called her, because she was working. I think I called her later on in the evening and I told her. I told my mother over the phone. I called my sisters. (51 year old female) The same patient,a51 year old female,explained why it was easier to discloseover the phone: Just, just, yeah, but it is different when y ou are actually looking at the person, you know, and you just kind of see them just, you know, look all blank trying to absorb the information, so I guess in some ways it probably was a little easier to do it over the phone, because thenyou, there is that little bit of a, that distance of while they are absorbing it mostly, in fact I think, yeah, probably its a little easier. I told my dad over the phone. Many patients explained that they told family members face-to-face. However, some patients told family members individually while other patients told their family members in groups. Those who told thei r family members in groups explained the experiencethis way: We was at my brothers funeral home. I mean, you know, and so I told them while we was at that meeting. Thats all. We have, we be together all the time. Like I said, my family be together all the time. (66 year old male) When the doctor told me, the day he told me. They just came over and I just told them all.(75 year old female) Those who told family members individually explained how they told. I told my husband when I came home. Did I go, I went to see my daughter, and then I told our son and daughter-in-law, I told them in person.(51 year old female) No, its maybe one by one because thats the way they did; they didnt come all at one time. Like I tell this one when they come over and the next one I tell her like that. Thats what I did.(76 year old male)
63 Similar to the section on disclosure experience, late diagnosis of colorectal cancer appeared to impact the communication context causing patients to explain their diagnosis to their family members after they started treatmentorwhile in the hospital. I told them right after the surgery. I didnt know I had cancer. (54 year old female) When I came out of recovery I told th em because they told me what they took out, so they was all there. I to ld them. (60 year old female) And so, they came to the hospital. We ha d our own private time to talk about it. Nobody imposed upon that time. (48 year old female) Expectations and Reality of Disclosure. This portion of the interview focused on how the patients felt after revealing thei r diagnosis and what they expected from telling their family members about their diagnosis Most of the patients said that they felt relief. Responses to the question about how they felt after revealing their diagnosis included: I guess relief would be a good word. (51 year old female) I felt relief in telling her, yes, because I figure, I figure shes going to be here anyway, you know. ((laughs)) And shes going to talk to the doctors, and you know, and she did, yeah. (89 year old female) I felt relieved. I felt a burden was off my shoulders, you know what I mean? (76 year old male) One patient expressed th at she felt uninformed: I just wanted to know more information, where its going to be because they was acting like it wasnt real serious and then when its like your mom had it (also)so it IS serious. So, it was like I stayed in th at stage for a while. (27 year old female) A coupleofpatients felt the need to pray after disclosing their diagnosis: So I learned to pray, to read my Bible, and my pastor came for three days in a row and prayed, read the Bible, had prayer meetings, until I got to be all right. (54 year old female)
64 Well, you know what, I was just peaceful when I told them because when I told them I had cancer, he told me I had cancer, I was like well, you know, and I prayed about it, so I was peaceful with what I had to do. Either way, I was at peace. (59 year old male) When youre facing a crisis, sometimes its not about this or the world is saying, or who knows what, but sometimes we just ha ve to get in touch with the Lord. (65 year old female) Patients were also asked how they expect ed their family members to respond to the news of a colorectal cancer diagnosis Though patients said they prayed after disclosing their diagnosis, only one patie nt said that he expected prayer. Like I told somebody, its like when you getsick, all prayers help, as far as I am concerned. I want people to pray for me, you know, because I just dont want to have to go through that by myself.(59 year old male) Mostpatientsexpected other forms of emotiona l support, the expectation that their loved ones would provide empathy, l ove, trust, and show concern. I didnt expect anything else, except to be here and be with me at least a week or two, you know, after. Of course, if she ha dnt been here, my granddaughter would have been here.(89 year old female) I expected they was going to come visiting, you know, see about me, which they did. (70 year old male) I expect them to take it and, take it and be strong with it, you know what I mean? And be strong with me. Because I needed their strengthas much as they needed my strength. So I told them, you know. (76 year old male) Patients were asked to desc ribe what FDRs actually did for the patient after learning that the patient needed treatment for colorectal cancer. Patients expressed a range oftypes of support including appraisal, emotional, informational and instrumental support. Reports of appraisa l support or receiving information for self evaluation, constructive feedback, affirmation (a positiv e statement or judgment), and social comparison support are below:
65 They was just saying its something th at God planned. You know, its something like its out of your control, you know? (54 year old female) Well, daddy-they just called me and said Daddy, were going to beat it because you caught it in time. You didnt wait until it spread. So,my wife and my children, they just went on to war with it, you know.(76 year old male) Patients also reportedthat they received emo tional support including love, trust, and care: I think for them-for all of us it was just a sense that, you know, we could kind of be here and go through it together, be cause I would have been probably really scared up there by myself, and you know, even my husband and my daughter and her kids were there, but you know, you ha ve your mama ((laughs)). (51 year old female) she was with me the whole time. Every day I was there. She worked but she just, afterwards she came there, at night she stayed there, and so Im so grateful after that.(59 year old male) Oh, they was there thenight I went up to the surgery and up until I came home. They go home and rest, because they got kids, so theyd go home and theyd rest, and theyd come right back (54 year old female) Informational support in the form of pr oviding advice and suggestions that a person can use to address problems was desc ribed by patients. One patient who was diagnosed with cancer at an unusually young ag e described some advice given to her by a family member: So my Auntie, shes like you need to talkto a counselor ((laughs)). So she had me, she called the counselor for me, and sh e was like you need to talk to the counselor about this situation and that way you get everything out. And you know, supportive, You should not be scared, and everythings going to be okay. (27 year old female) Another patient also descri bed some of the advice sh ereceived from family members: Well, when my daughter came I had told her that I had cancer. She said mom, dont worry about it because God still is good, you know, and hes not going to take you yet. (54 year old female)
66 Patients said that FDRs displayed instrume ntal support in the form of providing tangible aid such as cooking, cleaning, and transportation more than any other type of support. My mom helped me a lot, in the worstmonths. You know, she cooked for me because I couldnt really move around as much, but my mom, at the age 70 almost; she cooked for me and everything. And my daughter would come over or I would go out there and stay, but I had a lot of support actually. (63 year old female) Take out the trash, more so than what they used to do. I didnt have to say, Take it out. You know, clean up, pick up behind th emselves. I didnt have to do any of that kind of stuff. (54 year old female) They kept cooking the food to see, to eat for me. And they support me, and read the Bible to me. And they support me, they clean up. They support me any kind of way that I needed them there, they di d. And so Im appreciative for those two little girls for that. (48 year old female) Patients were asked how their family hadr esponded to them since their treatment ended. Patients explained that their FDRs c ontinue to provide emotional support in the form of showing concern through phone calls and checking up on their health. Well, they all keep asking me how I feel, are you feeling sick or anything. I said no, I feel normal. Every now and then I get irritated with my, you know, the feeling. (70 year old male) Good. Yeah. They call me every morning. My daughters call, and my sons called me, you know. Its more like a closer thing. Its not like I forgot. They call. (76 year old male) Well, good, and they come around, they come around a lot. As always, they always come around a lot. And every time I see my sons, Oh, mom, how are you doing, mama? (65 year old female) Another patient said that shecontinuedto get instrumental support from their family members: My daughter, my sons takes me to work and my daughters pick me up I still work on a regular basis (64 year old female)
67 Patients also reported that their family members reverted to treating them back to normal or as if they were never ill: Fine. Hmm, well, they, I ((pause)) I dont know why I guess I dont expect you know for them to do for me, especially things that I can dofor myself. (64 year old female) Oh back, Id say, back to the same, you know. You arent a boy. Well, I dont know if you know how boys are, but oh my goodness, oh! They are back the same, back to the same. Its like mama has never been sick before. (54year old female) Most of the patients in this study were positive about their decisionsto share their diagnosis with their family: I feel good about it Because, I mean, its nothing really to hide, you know. Theres nothing really to hold back or hidewith, you know, when you got cancer, you know, a lot of people do, but I dont feel like that, you know, and my family dont feel like that. They support me, you know.(63 year old female) Yeah, Im happy, Im happy I told. Yes I am. Im happy about it I dont know, you know, I dont know, if it went by why s hould it be such, why would I want to keep it so secret? Why? (75 year old female) Yes, I did the right thing I did the right thing Because if you are going to be a family, you dont hide. You share. The good, the bad, you know. You share. (76 year old male) Effects of disclosure An important goal of the patient interview was to understand the effect of the patients diagnos is on his/herfamily me mbers. Patients were asked the question, what type of effect do y ou think disclosing your colorectal cancer diagnosis has had on your relatives? Many patients felt that that by sharing their diagnosis, family members now have more aw areness and understanding about colorectal cancer.For example, patientssaid: Well, I mean, I definitely feel like they are all aware that, you know that they are aware of colon cancer. And I mean I think, you know we were pretty young when my grandfather had Colon Cancer, but you know they are all aware, they are committed to getting regular checks, you know getting their colonoscopies, and
68 my daughter, she is like calling me when sh e gets to that, when she reaches that ten year mark. (51 year old female) I think it just kind of created awareness. And then weve been kind ofmaking sure that we share our health informa tion anyway because we found that we kind of got these, you know different things that us tend to start, were seeing it, its running through the family, y ou know. (65 year old female) I really think that thathurt us. We weren t exercising like I should have been, you know and things like that. But now, you know, they are physical. They like to go out and do things, you know, because most of them they just sit around and watch a game or something like that. But they like outside stuff now. They like to go outdoors and do things. (54 year old female) Patients also felt that going through colorectal cancer treatment made them become even closer to their family: You know, I guess the bonding that happens when youkind of go through something like that. (51 year old female) Its like-we are strong. (76 year old male) I think it pulled us closer together, you know, that to think that youre too busy, where I was saying earlier, youre too busy to eat lunch together. Everybodys going to work. Everybody going to work, and everybodys too busy. So I think it had an affect on her. How important is it to have lunch with your mom? You know, my mom had already passed away at 59. Our family is not very long. So how important is it to make time for lunch, make time for Clearwater, Florida, to enjoy that beach and sunshine and to ma ke time for the little th ings. And to make sure you talk about it, because if you dont talk about it, that doesnt make it go away either. I think it had a good affect, actually. (48 year old female) Patients also were asked if their family members hadbeen screened as a result of learning of their CRC diagnosis. Twelve (n=12) patients said that their family members were screened. Comments from those patients wh o said that relatives hadbeen screened are below: all from my experience my sisters imme diately went and had Colonoscopies. They had immediately did. (51 year old female) And two of my brothers and two sisters went and got tested, and they came back clear And my other brother, he had his done recently, my brother and I, he had
69 had his done about three months after I did. So, we all getting it, everybodys getting it done. (66 year old male) I told all of them. My daughter takes it. My daughter just took all her tests, and had her teeth done, and the whole nine ya rds. She was telling me the other day, shes done it all. ( 65 year old female) Other patients felt that their diagnosis had no effect on their FDRs screening behaviors and they have not been screened for colorectal cancer: No, my oldest brothers, my second olde st brother is supposed to have one, get tested, but then I think he chickened out his wife said ((laughs)) and he never went So he missed the appointment, but I think was scared about it They just cant believe it. They just, I think it affected them a little just to think about it, but theyve moved on. They are like, Oka y, nothing happened, I havent felt no symptoms. I still tell them that you need just to go get checked out. (27 year old female) None. Uhn-unn. They should have, what they should have done, my two daughters, was went and be tested for col on cancer. In fact, the doctors told them to, but neither one of them have gone yet. (63 year old female) Some patients were unsure if their CRC diagnosis disclosure had an effect on their FDRs. They never said anything to me about it. No, I sure dont (know if they have been tested). I want to tell the truth, no.(70 year old male) I dont know. I havent talkedto them about that.(80 year old female) I dont know. I cant say because it dont seem like they, you know, like they are bothered, but I dont know. (75 year old female) Four patients were hopeful and believed that their FDRs plannedto get screened sometime in the future: All of them said they was going to get tested anyway. So its just a family thing. Everybody going to do it, but at a time, y ou know, one of my brothers, my brother that has a church, he had made an appointment already to get his colon cancer done. (66 year old male) Yeah, my, both of my daughters said they are going, and I mentioned it to my sons and one of them said he is going. (75 year old female)
70 Yeah, my sons, you know. I have two boys, and they are really up on it now, you know They plan to get it. (76 year old male) Patients also took an active role and sugge sted that their FDRs get screened and expressed a desire for their family members to get screened. Yeah. My children and I talked about it. I told them that they may have at what age they needed to start now with havi ng being tested. (64 year old female) Im trying to encourage them to do it, you know But I let them know that, you know, it could hit anyone, so this is, you have to take it seriously. (54 year old female) I know my sisters, they were both like, Oh, Im making an appointment. Im going there.You know, and Id say, Yeah, you need to go get screened.(51 year old female) Current perceptions of colorectal cancer. Patients were asked how does sharing adiagnosis of colorectal cancer compare to sharing other secrets or private information that they had to share with family members in the past. The patients in this study had a difficult time answering this question directly. Patient answers to this question are below: It was easy to talk about it. It wasnt not hing private about it. (66 year old male) I guess we tend to be pretty open, so I di dnt consider it something that I needed to keep secret, or be afraid to tell them, or feel embarrassed about or anything. (51 year old female) I didnt hold it from anybody because I know some of my coworkers have gone through cancer, I didnt know what type of cancer they had, but I was glad they let me know because I could pray for them Like I told somebody, itslike when you get sick, all prayers help, as far as I am concerned. I want people to pray for me, you know, because I just dont want to ha ve to go through that by myself. Not just the family members. Everybody, even my aunts. They go to another church, but they put me on their prayer list. Im sorry, I just, thats my feeling. Some people dont feel like that, but thats just how I was brought up, you know. Prayers, prayers help, and I didnt hold it back from anyone. (54 year old female)
71 Finally, patients were asked, Since your diagnosis, what comes to mind when youhear about colorectal cancer?Most pa tients thought about colorectal cancer education and prevention: What comes to mind is I wish we were more educated about it-and we are just finding outabout it If we pay more atte ntion to it, you know, its better for us, you know. Youve got a better chance. But when you are ignorant to it and you dont want to pay a, no attention to it, w ell, aint nothing wrong with me.Thats when it really hurts. (76 year old male) That we should always, you know, take care of our bodies, you know, get tested When I hear about it in the news and see it on television and see, its becoming too common. Its becoming, its something that we are eating, or somethingwe are dealing with, that causes it. (65 year old female) Its a successful cancer, I think. Eating habits change, changing eating habits, exercising, you know, and I think its a cancer now that, Im not going to say that its licked because cancer is cancer, I dont think that anybody is safe, you know. And I just think its one of those cancers now you can say that, like Tuberculosis is now, you can say that you are going to live. You can live with that. If you do what you are supposed to do, you can live with it. And thats what I think about it. (54 year old female) Others discussed the lasting effects of their treatment: I just hope they got it all when they operated. (70 year old male) When I hear colorectal cancer, I think about, to be honest with you, the people that get it in my age group, at within that age group where the souvenirs of cancer survivors-at least the souvenirs of colo rectal-colostomies. I dont think that I would give anything to change surviv ing cancer, but at the age that I am,in middle age, why did I think it would be more acceptable to have a colostomy souvenir for my cancer survival in my late r years than in my middle years. It will lead you to not be able to figure out intimacy. And it will lead you to still have to struggle with self-esteem. Well, self-esteem struggling with is easier than life and death terminal bed. So if you get to th e point between terminal and colorectal where the rectum is diseased by cancer, then you throw the rectum away ((laughs)) and you deal withthe intimacy problems every step you can. There are supports out there that tell you how to do it. And, but its hard for my age group, I think, to get the souvenirs of cancer and to try to live through, you know, a happy, joyful, intimate life.(48 year old female)
72 Section II: First-Degree Relatives Age, marital status, and health insurance. The first-degree relative (FDR) sample consisted of 16 adu lts 2 men and 14 women who had a first-degree relative diagnosed with colorectal cancer in the past 5 years (2004-2009). To be eligible for the study, the FDRs could not have a persona l history of cancer. One FDR refused to complete the demographic section of the study. Ages of the relatives in the sample ranged from 31-72 with a mean age of 47 and a medianage of 44 (see Table5). The majority of the total FDR sample were married (n=10), one was divorced, one was widowed, two had never been marrie d, and one was a member of an unmarried couple. FDRs were also asked to indicate their insurance stat us and typeof insurance. All but one FDR indicated that they had insuran ce. Most FDRs had private insurance (n=7), four had Medicare, one had Medicaid, and two had insurance through the U.S. Military. Social economic status. In order to examine the SES, FDRs answered questions about education, employment status, and annual household income(see Table 6).The majority of the total FDR samp le were high school graduates, with six obtaining a high school diploma, three having some college or technical school e ducation, one completed college, and three completed graduate or pr ofessional school. Most FDRs were employed for wages (n=9), one was out of work for more than one year, one was a student, three were retired, and anothe r was unable to work. Four FDRs had incomes of less than $10,000, two had incomes of $10,000$25,000, one had an income of $25,001-$35,000, four had incomes of $50,001-$75,000, three had incomes of $75,001-$100,000, and one had an income of over $100,000.
73 Table 5:Sex, Age, Relationship,Marital Status, and Health Insurance (FDR) (N=16) VariableN% Sex Male212.5 Female1487.5 Age 30-39425 40-49743.7 50-5916.3 60-69212.5 70-7916.3 Missing data16.3 Relationship to Patient Brother16.3 Son16.3 Sister637.5 Daughter850 Marital Status Married1062.5 Divorced16.3 Widowed16.3 Never married212.5 Member of an unmarried couple 16.3 Missing Data16.3 Health Insurance Yes1487.5 No16.3 Missing Data16.3 Health Insurance Type Medicare425 Medicaid16.3 Private743.8 Military212.5 N/A16.3 Missing Data16.3
74 Table6:Education, Employment Status andAnnual Household Income (FDR) (N=16) VariableN% Education Completed Some high school212.5 High school graduate637.5 Some college or tech school318.8 College graduate16.3 Graduate or prof essional school318.3 Missing Data16.3 Employment Status Employed for wages956.3 Out of work for more thanone year16.3 Student16.3 Retired318.8 Unable to Work16.3 Missing Data16.3 Annual Household Income Less than $10,000425 $10,000-$25,000212.5 $25,001-$35,00016.3 $50,001-$75,000425 $75,001-$100,000318.8 $100,001 or more16.3 Missing Data16.3
75 Telephone Interviews Semi-structured in-depth telephone inte rviews were conducted withthefirstdegree relatives of colorectal cancer patients from May 2009-August 2009. The interviews were conducted with the use of an interview guide(Appendix E), which included a list of questions grouped by topic and domain. The approach to the interviews was the same as the patient in terviews in that they were conducted with a preformulated interview guide, and answers to those questions were allowed to be fully expanded at the discretion of the interviewer and intervie wee, and could be enhanced by probes. All sixteen of the interviews were recorded. Each interview lasted approximately 15-30 minutes. First-degree Relative Telephone Interview Findings Disclosure experience. The first part of the interview focused on the FDRs experience with learning that his/herfamily member was diagnosed with colorectal cancer. This question was posed in a manner for the participant to answer freely. As expected, the majority of FDRs had a difficult time hearing the news and ultimately accepting the diagnosis. They expressed shock and concern. Some of the FDRs reactions are expressed below: Well, I was concerned. I was, because y ou know its not the first person in our family that had this problem with colon cancer. (68 year oldsister) I was actually shocked to find out because he is one of the healthiest people that I know. He is the only person in the world who eats cottage cheese So I was really shocked when I found out that he had cancer. Not that your diet has anything to do with it, but just because hes so health conscious. (38 year old daughter) It was devastating, traumatic. I wasnt expecting that. (44 year old daughter)
76 FDRs were then asked about the first three things that came to mind when they learned about their relatives colorectal cancer diagnosis. This question was asked to gain an understanding of theFDRsthoughts about CRC prior to their relatives colorectal cancer treatment. Similar to the patient group, the majority of FDRs were concerned with death and were unsure if the patient would be able to survive the disease. A few of the FDRscomments about death include: Of course, you know, death crosses y our mind, and you know (42 year old daughter) I guess the first thing was I was going to lose my dad. (45 year old son) Was my dad going to make it, you know, whats going to happen? (32 year old daughter) FDRs were also concerned aboutthe treatme nt for the disease and the effects of treatment on the patient: How long is he going to have to do medi cation? And things like that. (45 year old son) What were her care options, and that was probably the biggest thing. (42 year old sister) Is she going to have to go through, you know, all the usual things, like losing her hair, chemo, and all of th at?(31 year old daughter) One FDR expressed concerns about her own health given the frequency of colorectal cancer in her immediate family: When I first learned it brought concerns to mebecause my mom, she also had colon cancer, and one of my aunts. That brought a concern to me because I know that Id probably be a higher risk. (32 year old daughter) Two other FDRs were less concerned with death, and expressed more hopeful thoughts whenthey learned of the colorectal cancer diagnosis:
77 And I just said like she was going to be alright. I felt it was going to be alright. So I just thought on the positive side that, you know they were alright. I know a lot of people, you know, that had it and they came through it, you know. (71 year old sister) The doctor would just treat him, you know, so it didnt bother me too much. (sister of unknown age) FDRs were asked who told them about their family members diagnosis. This question was important tolearn if patients disclosed informa tion about their diagnosis on their own or if FDRs were told by a third pa rty. A side-by-side comparison of patient and FDR responses is provided in Section III. It wa s found that the majority of FDRs (n=8) in this sample were told about their family members colorectal cancer diagnosis directly by the patient. Four FDRs reported that they were told by other family members and four FDRs reported that they were told by the patient s physician. Examples of answers from those who were told by other family members included: I think his wife told me. He had gone to the doctor, I think, and came home and she called me. And I remember because I was actually at a workshop. (38 year old daughter) When she first came down with it,they (family members) really didnt tell me really what it was. They just told me sh e had to have surgery. And after she had surgery and I, you know, I found out what it was. (71 year old sister) Those FDRs who were told by the patients physician explained how they were told: The doctor told my sister and me that he had the cancer, and that he took pictures and he showed the pictures to us.(53 year old sister) The doctor just examined him and then he called us all in and we all sat around a table, so he explained, you know, what wa s happening, and he said what he would have to do and things like that. (68 year old sister) I couldnt remember the doctors name, but the first time she had it, he was very abrupt, and he explained to me very briefly, and I just felt like a long walk, a long,
78 long way back to my car. I just couldnt believe what he was telling me. (43 year old daughter) It was also important to find out the FD Rs perception of why the patient wanted them to know that they were diagnosed with colorectal cancer. In the cases where FDRs were told directly by the patient, most FD Rs believed the patient wanted them to know because of his/her existing close relationship. Examples of this belief included: Well, because, we was always, we was close. My whole family. We was very close, and we cant let cancer and stuff lik e that keep us from each other. (68 year old sister) Just because Im his sister and kind of le t each other know whats happening with us. (68 year old sister) We always talk about, you know, nearly everything, so you know. (71 year old sister) The next most common belief held by FDRs of why the patient told family members about his or her diagnos is related to the patients c oncern about the severity of the disease anduncertainty about surviving colorectal cancer. I think when he, when he got like bad on, when it came surgery time, you know he did, it was just like the point where you know he had to let someone know what was going on. (42 year old daughter) I think atone time she was She thought for sure she had it bad. (68 year old sister) Because she was concerned. She didnt know how bad it was going to be, you know what they was going to find in her. Polyps or, you know, things they were going to have to take out her Co lon or not. (53 year old sister) Communication context. FDRs were asked to describe the environment including the time and place where they were to ld about their relatives colorectal cancer diagnosis. FDRs expressed both positive and negative experiences with being told. A few relatives found out face-to-face while others were told over the telephone. Three FDRs
79 found out while at the hospital or doctors office at the same time as the patient. In two of the cases, the reason was due to late diagnos is. One FDR described the status of the patient when he/she was told in the hospital. she was out of it. She was, she had had the, by the time I had got there, they had just pushed her into surgery, and she really was out of it. The only thing she could do was like nod her head. (45 year old daughter) This same FDR felt guilty because she was not at the appointment when the doctor suggested that her moth er should have a colonoscopy. Then the doctor said that on one of the vis its that I didnt go with her that he had actually said that he wanted to set he r up, to schedule her for a colorectal screening she had never been screened for it. (46 year old daughter) The majority of FDRs (n=9) were told about their family members diagnosis over the telephone compared to those who were told in the hospital (n=3) or face-to-face (n=4). FDRs explained: Well, that was the most convenient way to tell me at the time, because I wasnt there. Now, they could have called all of us over and sat down and told us about it, but it was just easier over the phone. (38 year old daughter) Well, it was done over the phone;he called me on the phone and talked to me. (45 year old son) She told me over the phone, so I was in the house on the phone and she was at home, and she was just sharing. (42 year old sister) FDRs also expressed what they thought were the positive consequences of being told over the phone. Being told over the phone allo wed FDRs to hide their initial reaction from the patient and not observe how the patient reacted to the news of the diagnosis. The only good thing that I could say about that is that-sometimes you are not able to see how the other persons emotions are, so its not as hard, you know. (32 year old daughter) Well, the good thing is I guess that she couldnt see my kind of shock. (42 year old sister)
80 It made me feel good because she was, you know, she wasnt depressed about it or nothing I know she was strong, so I just, you know acted strong with her. (71 year old sister) Reaction to disclosure. Also important for this study was to understand how FDRs reacted to the news of their relative s diagnosis. FDRs were asked, How did you react when you first learned about the color ectal cancer diagnosis? As expressed in the section on the disclosure experien ce, most FDRs were in shock: We were just shocked, you know. There was really nothing you could do. You know, you just, youre like shocked to hear the news. (42 year old sister) I just said, Really?and kind of stood there with my mouth open for a minute. (44 year old daughter) Again, it was devastating, y ou know, and Im saying I was in shock for a minute. (42 year old daughter) FDRs were also probed to find out if they were empathetic or if they offered to do or say anything to help after the disclosure. They expressed gestures of various types of support. Some participants expressed informational suppor t through the provision of advice, suggestions, and information: The only thing I told my dad was to be strong, and I told him, you know, I had confidence that he would beat it because like I said my dad is a very confident person, so very strong-willed, so I told him, you know, do what the doctors tell you to do. Make sure you are following their advice, and you will be okay. (45 year old son) Well, later on that night I came home and I went on my, looking it up to find out, because I think it was like stage 3 or 4, so I started doing my own research to find out. What is Colon Cancer? What is Stag e 3? Where do we go from here? What is the treatment? What are some of his opti ons? So I did my own research, and my sister was doing her research, and we ki nd of compared notes. Okay, well this is what I found, and what did you find, and th ere were some simila rities about what needed to be done. (38 year old daughter) Instrumental support in the form of tangible aid was also expressed.
81 We offered you know to help and you know to help with his drugstore, you know work around the house. But you know, its been like that with some older people, when they are used to being, you know, independent, they really dont want too much help. (42 year old daughter) Anything she needed doing, we was there. Whatever she asked me. Bring her food, take her somewhere, run errands. We did anything for her. (68 year old sister) when she was in the hospital Id go out there, and you know, and stay be talking and shed be wanted me to start gi ving her stuff and start taking it to her. (31 year old daughter) Emotional support or the provision of empathy, love, trust and care was widely offered among this group of FDRs: I let him know that we are thinking about him, and you know, in touch with him and checking on how he was doing. (32 year old daughter) I went over there, you know would go over there and visit heryoung ones, and even see when she was in the hospital Id go out there, and you know, and stay and be talking and shed be wanting me to start giving her stuff and start taking it to her. (71 year old sister) I just let her know I was there if she neededme. (42 year old sister) Prayer and faith in a higher power was also expressed by FDRs in this study. FDRs were vocal about giving support in th e form of prayer to their family members diagnosed with colorectal cancer. It was most ly used as a way to copewith the news of the colorectal cancer diagnosis. No, I just, I didnt cry, I just prayed about it, you know.(32 year old daughter) You know, I just, well we just had to ta ke it and put it in Gods handsand that was it. (68 year old sister) The only advice I had was she had to trust in God through it. (68 year old sister) Impact of Disclosure. Many FDRs (n=11)reported that their family members colorectal cancer diagnosis impacted their health positively, created an increased
82 awareness about the disease, and encourag ed timely colorectal cancer screening behaviors. A few patients expr essed how learning that colorectal cancer runs in the family hadimpacted their health behaviors. Yes, I do work out, where I wasnt working out and stuff, I do work out. We did start watching our diets around the house a little bit. Im not going to say, were not healthy people, but you know, just things that we eat, you know, to prevent other illness Im working harder at it now and before I just always said, you know, Im going to stop smoking one day. Now I said I would stop. (44 year old daughter) To take better care of myself try to eat right and exercise. (45 year old daughter) Oh, I run, I play racquetball every day. I run, I watch what I eat. I try to stay away from fried foods, and I try to, I try to get on the deal with my mom, like the fruits and the-its hard. (43 year old daughter) FDRs (n=5)said that that their family members played an active role in encouraging them to get screened and talk to their physicians about colorectal cancer. Some suggestions that FDRs recalled included: Well, she said that I needed to talk to my doctor to have myself checked out. (46 year old daughter) One of the things that my dad started le tting us know, the males in our family, that we needed to go get this checked out. (45 year old son) Probably itsthe only reason why I was even thinking about it, because I mean she says that the doctors encouraged her immediate family members to get screened ten years earlier than when she was diagnosed (31 year old daughter) As a result of encouragement from patients and learning that colorectal cancer impacted their families;FDRs expressed an interest in getting themselves screened for colorectal cancer. Several FDRs (n=9)reported that they consulted with their physicians and informed other family members about th eir possible risk fo r colorectal cancer: So I think the only thing I was worried about then was, you know, maybe I need to get myself checked out. (45 year old son)
83 Well, I scheduled myself for my first Colonoscopy. (42 year old sister) I informed my doctor. I let my sons know that its a possibility that they may need to be (checked out), that they become older (44 year old daughter) Three other FDRs said that although they were aware of the disease they didnot have all the information they neededin order to effectively prevent colorectal cancer: Well, I try not to, well I do exercise, but I am still concerned about, you know, both my parents being diagnosed, and having colon cancer. I really dont know what, you know, what steps you are supposed to take. (32 year old daughter) So it made me, you know, take more heed, but I still didnt do as much research as I probably should have or coul d have. (32 year old daughter) It had a lot of impact because the first thing-well, then you start thinking, is that hereditary? Will my children have it? Will I have it? Is this a one-time deal? Is it just individual cases? Where does it go from there? (38 year old daughter) OtherFDRs (n=4)concluded that the patient s diagnosis did not have any impact on them and they would not do anything diff erently about their health as a result of learning about their family members diagnosis. I never planned on going anyway Am I concernedabout my OWN health? Not really. (32 year old brother) No, not that I know of. Nothing that I know that I need to do differently. (71 year old sister) No, it really didnt because, I dont know, sh e just said it wasnt serious. (68 year old sister) Current Perceptions of Colorectal Cancer. The concluding question of the FDR interview asked, When you think of CRC now, what comes to mind? FDRs mentioned family and the ability to survive colorectal cancer. One comment about family history was: My family. I mean, thats about all that really comes to mind. My mom had had it and now here I think its not just my mo m that had it, my dad has had it, and thats basically, you know, some of my c oncerns, as far as things that come to
84 mind. Two of my, you know, biological you know parents have had Colon Cancer so thats the first thing that I listen. If I hear something about it, I will listen. (32 year old daughter) In terms of survival, FDRs had a positive outlook of CRC as a result of having a family member survive the disease with few complications: I think it is something that you can deal with and you can get through. Its not like, okay, this is the end of the world.(38 year old daughter) I know its one of the cancers that, you know if caught soon enough, it can have a very good outcome in many cases (42 year old sister) To keep it going, you know, keep whatever tests for the problem. The great thing, even though they can test you for problems, you can survive it. (68 year old sister) Section III:Family Group Comparison Description of family groups. There were five family groups analyzed for this study. A family group consistedofa patient who had two or more FDRs participate in the study. There were three female and two male patient families analyzed. Each individuals responses were analyzed to co mpare the similarities and differences among the responses of the patients and co rresponding FDRs within each family. Familygroup 1. Family group 1 was comprised of a 51 year old female patient, her 31 year old daughter, and her 42 year old sister. The patientsresponses were consistent with her FDR responses and it appeared that the patient had a good recollection of her diagnosis ex perience. The description the patient gave about when and how she told her family members corresponded with herFDRs memoriesof the event. The patient remembered her family being shoc ked by the news of her diagnosis and the FDRs also expressed their shock and fear upon learning of the diagnosis. The patient felt well-supported by her family and the FDRs expr essed that they made the patient aware that they were available to give support. The patient felt that he r FDRs became more
85 aware of colorectal cancer because of her experience and stated that all of her sistershad colonoscopies as a result. The patients 42 year old sister stated that she has been screened for a colorectal cancer and would not have otherwise been screened, if not for the patients diagnosis. The 31 year old daught ersaid shewas aware of her increased risk and plannedto get a colorectal cancer screening exam ten years earlier than the age her mother was diagnosed with colorectal canc er. Details of the familygroup 1analysis are visible in Table 7.
87 Family group 2. Family group 2 includeda 70 year ol d male patient, his sister of unknown age, and his 42 year old daughter. Th e patient and his daughter thought about death when they first learned of the patients diagnosis. However, the sister was not very worried because she felt that the cancer could be treated. Within family group2, there were differences in the description of how the patient informed his FDRs about his diagnosis. The sister and daughter both said that theydid not know her brother had cancer until the doctor told her at the time of the surgery. However, the patient felt that he told his family members individually, at home before his surgery. The major reason the patient said he told his family members about his diagnosis was because he wanted support from his family. Hissister felt as if the patient wanted her to fix him up in some way, while his daughter felt as if he told his family as a last resort after he realized the seriousness of his illness. The patient felt as if his family members would not get screened as aresult of learning about his diagnosis. Neither the sister nor the daughter of the patient committed to getting screened for colorectal cancer. The sister said she would consider talking to her doctor about screening and the daughter plannedto take better care of herself by goin g to the doctor more often.A closer look at familygroup 2 is available in Table 8.
89 Family group 3. Family group 3 was comprised of a 65 year old female patient and hertwo daughters aged 43 and45. The pa tients main reason for disclosing to her family was because she wanted them to be prepared in case she passed away. Her two daughters both said that she told them because she wanted them to take care of her assets and responsibilities. The 45 year old daughter al so agreed with the patient,and said that she wanted them to be aware of what she wa s going through in terms of her health. The patient admitted that she didnt tell her family about her diagnosis right away;she waited for the right time and then told her younger daughter who lives nearby. The younger daughter also said that her mother told her. The older daughter who lived out of state was told by her sister at the time of her mothers surgery. The patient felt that she was supported very well and her daughters managed everything for her while she was ill. The patient s daughters also said that they supported their mother and described the different type s of support that they provided. The patient hopedthat her daughters ta ke better care of their bodies as a result of learning about her colorectal cancer diagnosis. She also belie ved that both of her daughters hadbeen screened for colorectal cancer. However, ne ither of the daughters was screened but both planned to get screened in the future. A dditional comparisonswithin family group 3 are listed in Table 9.
91 Family group 4. Family Group4 included a 64 year old female patient and her twooldersisters, one 68 years old and theother 71 years old (see Table 10). Within this family group, each FDR believed that the patient disclosed herdiagnosis for a different reason. The patient said that she disclosed so that her FDRs knew what they could expect from the patient including what she was able and unable to do while ill. The 68 year old sister believed she disclosed because of their close relationship and to encourage her to get screened again. The 71 year old sister be lieved the patient disclo sed so that she could get support and assistance when needed. Th e patient remembered calling her sisters on the phone to tell them about her diagnosis. On e sister remembered being told over the phone. The 71 year old sister remembered being told by another sister (not the patient) and was only told that the patie nt had to have surgery. She only found out that the patient had colorectal cancer after the patient completed treatment, not colorectal surgery specifically. The patient remembered her sist ers being calm when they found out she had to have surgery and the sisters also agreed that they reacted calmly. In terms of colorectal cancer screening, the patient believed thatone ofher sistershad been screened. In fact, both sisters were screened previously; however one sister was unsure when she should be screened again.
94 Family group 5. Family group 5 was the largest of all the family groups and consistedof a 76 year old male patient, a 45 year old son, a 44 year old daughter, a 38 year old daughter, and a 32 year old daughter. The first thing that came to the patients mind when learning of the diagnosis was that he could survive the illness. The patients son and 44 and 32 year old daughters were concerned with the possibility of death. The 38 year old daughter was con cerned about what to do next. The patient stated that he told all of his childrenabout his diagnosis himself. The patients son and the 44 year old daughter agr eed that they were told directly by the patient.However,the 38 and 32 year old daughters said that they were told by their step mother. The patient said that he disclosed so that if he became extremely ill, his children would be aware of why he was ill. The patient also expressed that he needed his childrens strength and support. All three of the patients daughters agreed that the patient disclosed in or der to get support.However, the patie nts son felt as if the patient was pressured by his step mother to disclose and that the patient disclosed unwillingly. In terms of disclosureeffects, the patient said that he now has a closer relationship with his children and that they pay more atte ntion to their health. The patients 45 year old son and 44 year old daughter recall that the patient stressed the need for the men in the family to get tested for colorectal cancer. The 38 and 32 year old daughters were concerned with thefamilial risk for the dis ease. Additional comparisons of family group five are presented in Table 11.
98 Summary This study was initiated to explore a topic for which little research has been conducted. Analysis of the data was conducted with the goal of answering the research questions for the study. Semi-structured, in depth, face-to-face interviews and semistructured in depth telephone interviews were conducted to examine perceptions and descriptions of how family support and closen ess to the patient impacts disclosure to first-degree relatives and how this disclosure influences the CRC screening activities in African American families. Section I reported on the patient study goal s, the first of which was to determine which factorsinfluence a patients decision to reveal a CRC diagnosis to a family member. In this study, qualitative methods we re employed to elicit details of patients disclosure of a colorectal cancer diagnosis to first-degree relativesand the criteria patients use to decide whether or not to disclo se their diagnosis. It was found that severity of the disease, closeness to family and FDR risk for CRC were the factors that appeared to have the most influence on disclosure. Th e second goal of the study was todetermine the utility of the Family Secrets framework andexplain what decision-making criteria patients use to help them decide to disclose a CRC diagnosis. The qualitative interviews examined each construct includingwhether issues such as the patients well-being, the anticipated response from the confidant, the communication context, the patients perceived impact of the disclosure on family members, and the reward associated with disclosure influence a patients decision to disclose. It was found th at each construct from the framework was relevant and a pparent in the data. The third goal of the research study was to examine what roles the four types of social support play in a patients decision to
99 disclose their diagnosis to a first degree re lative. It was found that emotional support had the strongest influence on the decision to di sclose. Patients said that they expected emotional support from their first-degree relativ es in the form of prayer, visitation, and expressions of care and concern. Section II reported on the FDR study goals and employed the use of semistructured telephone interviews with the firstdegree relatives of the patients. The fourth goal of the research study questions was to determine how first-degree relatives perceive the information they received about the pa tients diagnosis. The FDRs in this study perceived the diagnosis as fatalistic, an expression of closeness to the family, and an opportunity to provide social support. The fifth goal was to understand how diagnosed patients influence the screening behaviors of first degree relatives through the four types of support. It was found that patients influe nce the health and screening behaviors of FDRs primarily through informational support. Section III was a side-by-side analysis of related questions from the patient and FDR interviews guides. This analysis compared the results of the family groups from Section I and Section II in order to determine if patient and FDR responses were congruent. It was f ound that: patients said they werecompletely open while FDRs felt patients were reluctant to disclose; patients turned to faith and prayer to help cope with the diagnosis;and FD Rs offered prayer to patients. There were discrepancies between patie nt beliefs about FDR screening actualFDR screening behavior.Further discussion of the results will be presented in Chapter V.
100 Chapter V Discussion and Conclusions This chapter discusses the results of stru ctured interviews conducted with cancer patients and their first-degree relativesContributi ons of this research to theory and public health will be described. The limitations of the study will be delineated, along with recommendations for future research directions. Colorectal Cancer Disparities Cancers of the colon and rectum have high erincidence, mortality, and later stage of detection rates for African Americans than for whites (ACS, 2008). Screening is a critical measure in the prevention of CRC due to its ability to identify and remove precancerous polyps that may take years to devel op into cancer. Studies have shown that in African American populations, a higher perc entage of CRC occurs in patients under the age of 50(Agrawal et al., 2005; Kanna, Sc hori, Azeez, Kumar, & Soni, 2007). In the current research study, a large number of patients waited for symptoms before they decided to schedule a doctors appointment or make a trip to the emergency roomand two patients were under the age of 50 when diagnosed. It was also common for them to have never had a colonoscopy before being diagnosed. Instead, patients explained that they experienced pain and bleeding before they sought treatment. Patients also explained that they felt uninf ormed about colorectal cancer and their treatment options before and af ter treatment. During one interview, the patient asked the interviewer if he really needed to do a follow-up colonoscopy after treatment. This
101 provides evidence for the fact that even af ter treatment, patients are unsure of how to prevent reoccurrence of colorectal cancer. People who have a first-degree relative with colorectal cancer are about twice as likely to develop the disease as those with no family history of the disease (ACS, 2008). For this reason, it is important for first-degree relatives of colorectal cancer patients to understand the screening recommendations for prevention and early detection. The FDRs in the current study reported that they realized colorectal cancer runs in their families, but FDRswere unaware of how to actively prevent co lorectal cancer. This is consistent with previous literature that reported that Africa n Americans who have first-degree relatives with CRC are less likely to participate in co lonoscopy screening and less likely to have endoscopic procedures before age 50 compared to whites with affected relatives (Murff et al., 2008). Health care providers ma y underestimate the impact that they have on an individuals decision to get sc reened. Powe and Adele-Kelly (2005)reported that patients may not be aware of the benefits of scr eening unless their health-care professionals discuss it with them. They also state that it is possible that healthcare providers have their own beliefs, and judgments about colorect al cancer that impacts their decision to recommend screening. A previous study by Fl etcher (2002)reported that physicians who do not believe in the importance of colorectal cancer screening may communicate their lack of conviction to their patients. Color ectal cancer screening can also be viewed negatively by providers due to the cost, time constraints, and lack of reimbursement (Rex, 2002).
102 According to the American Cancer Societ y (2009), a family history of colorectal cancer increases ones chances of developing colorectal cancer. Individuals with a family history of CRC or adenomatous polyps in any first-degree relative younger than age 60, or in two or more first-degree relatives at any age are considered at increased risk for CRC(ACS, 2009).Astudy by Kupfer, McCaff rey, and Kim (2006)found that black patients, especially men, were significantly less knowledgeable of paternal family cancer history than maternal family history compared to whites. This is troubling because one must be aware of his/herfamily history in order to participate in timely screening. Disclosure The manner in which the patients in the cu rrent study disclosed their diagnosis to family members depended on the severity of disease. Many patients in the current study waited for symptoms before being screene d, and were hospitaliz ed and/or underwent surgery before they were faced with the decision to disclose their diagnosis to family members. In these cases, the cancer was more severe, andFDRs often learned about the diagnosis and severity of disease at the same time as the patient. In some instances, the doctor informed family members waitingat the hospital, renderingdisclosure out of the patients control.This is c onsistent with a study by Henderson, Davison, Pennebaker, Gatchel and Baum (2002)th at found disclosure of a breast cancer diagnosis was predicted by severity of disease, with greate r severity associated with more disclosure. In contrast, patients who first learned about their CRC as a result of a colonoscopy had time to contemplate disclosure and decide whom to tell. In a study by Hallowell et al. (2005), patients described three communication strategies for disclosure of a genetic risk to their children: 1) complete openness, 2) limited disclosure, and 3)
103 total secrecy. In the current study, only the first two strategies were reported. Many patients said they had been completely or partially open in revealing their diagnosis. Another strategy reported was de layed disclosure in which patients told some FDRs right away, while waiting to tell others until they had more information about their diagnosis, waiting until they felt the time was right, or telling them when they felt they needed to know. None of the participants in the study re ported that theymaintained total secrecy. The extent of disclosure also varied w ithin the study population. All participants informed at least one family member about their CRC diagnosis. Some patients said they had been completely open with family memb ers (and even some co-workers); however, in some cases their FDRs felt this disclosure was done reluctantly. These FDRs believed that the patient told them, despite their reservations, because it would be difficult to hide the illness or because they wanted theFDRto become aware of the importance of CRC screening. These findings reinforce those of Gray, Fitch, Phillips, Labrecque, & Fergus (2000)who reported that, the perception of the ot her persons right or need to know about a prostate cancer diagnosis was a major factor motivating disclosureamong Canadian patients. Though someof the Canadian patie nts in the study said it was difficult to communicate the news to FDRs, there was a felt sense of obligation to let FDRs know about their familial risk. For example, one pa tient in the current study who practiced limited disclosure told most FDRs but did not tell her youngest daughter because she did not want her to know that she was dying. The patient was careful to avoid using the word cancer in the childs presence. Another patient in the current study who displayed limited disclosure said that she informed all of her family members. However, after an
104 interview with her sister, it wa s found that the patient only told her that she was having surgery and never mentioned that she was having surgery for cancer. Delayed disclosure also occurred among this studys patients.Somepatients waited until they were sure they were going to survive the disease or had more information on the treatment options before informing all FDRs. One patient avoided telling a sister for over one year because the patientbelieved that her sister was favored as a child. This case is consistent with Afif i et al. (2005),who reported that individuals may refrain from revealing a secret for fear of judgment and ridicule, or concern that the information would be used against them. Unlik e Afifi et al.s(2005)findings, the patient in this study reluctantly told her sister about her diagnosis in an effort to make amends with her sister. CRC patients reported that they often experienced distress when they contemplateddisclosure of their CRC diagnosis to FDRs. Patients wanted to protect their family members from the possible stress, worry, anxiety, and fear that they believed FDRs would experience on account of their illn ess. Afifi et al.(2005)asserts that people keep secrets because they are afraid the re velation will hurt the target of the secret, damage their relationship with that person, or impact other family members. Additionally Hilton et al. (2009)found that telling family a nd friends about a cancer diagnosis was one of the hardest aspects of having cancer. Patients in the study also said they experi enced relief after disclosing a diagnosis to FDRs. This could be due to the receipt of social support that the patients in this study received from family members. Because most FDRs in the current study reacted positively, the patients may have been more likely to have positive feelings towards
105 disclosure. Patients reported feeling more comfortable talking about CRC to their FDRs iftheir prognosis lookedpositive. This finding suggeststhat ones prognosis might affect apatientscomfort with the disclosure process. FDR Screening Some(n=6)of the patients in the current study said they encouraged their FDRs to participate in CRC screening and to make lifestyle changes in terms of diet and exercise. This is likely because these pa tients understood the importance of a healthy lifestyle and early detectionin the prevention of colorectal cancer. Most FDRs reported that learning of th eir relatives disease influenced their screening intentions and other health behaviors believed toprevent CRC. Nine (n=9) reported that they planned to get screened in the future because of their increased risk, and some also reported that they increased th eir exercise, changed their diets, and made a stronger attempt to quit smoking after learning oftheir familial risk for CRC. In contrast, other FDRs reported that they did not change their future plans after the disclosure. They said that they were more aware of their CRC, but they were unsure about the protective measures to take besides screening.In two cases, FDRs were also unwilling to be screened. One man, a 32 year oldbrother of a female patientdiagnosed in her 20s, also reported his mother was diag nosed with CRCat a young age.He explained that he was fearful of finding cancer and, unc omfortable with screening procedures that involved the rectum because he believed that pr ocedures in that area were associated with homosexuality. Mens adherence to an id ealized form of masculinity can have consequences on their health when they re ject behaviors that they associate with femininity or homosexuality (Courtenay, 2000). Another FDR in her seventies said that
106 she didnt plan on getting screened because he r physician never told her it was necessary, but she did plan to discuss it during her next doctors appointment. This case points to the importance of aphysiciansrecommendationfor screening. In a study by Madlensky, Esplen, Gallinger, McLaughlin, & Goel(2003), it was found that the strongest predictor of CRC screening was physician encouragement. Spirituality Prayer and faith played an important ro le in how patients a nd their FDRs coped with their diagnosis and treatment. Many patient s turned to their faith in a higher power and prayer to help them cope with CRC and to improve their chancesof surviving the disease. FDRs also offered prayers as a ty pe of social support they provided to their relatives after the diagnosis. These findings are consistent with Bo wie, et al.(2004)who found religion and spiritually to be significant personal and cultu ral resources within many racial and ethnic traditions and offer a context for promoting h ealth and individual well-being. For African Americans, t he church plays a critical role in the lives of most African-American adults in the southern United States; it has the unique ability to meet various spiritual, economic, social and cultural needs of th e black community (Blocker et al., 2006). Contributions to Theory This researchstudys contribution to theo ry includesthe exploration of a new way to understand the disclosure process in an African American population. The Family Secrets and the Social Support Frameworks were the basis for this study,and it was interesting to find that both were relevant to the population of interest. The use of the
107 Family Secrets Framework is a new contributi on to public health theory because it has not beenused specifically to help explain disclosure of a chronic disease such as cancer. A family secret is any information that directly affects or concerns a personbut is either withheld ordifferentially shared between or among family members (BrownSmith, 1998). According to Brown-Smith(1998), th e family is of specific interest in the study of secrets because it is considered to be the most important social organization and emotional environment that individuals encount er. Given this asserti on, it is important to understand what people consider when theyre veal secrets because disclosing family secrets can have substantial influences on indi viduals and their interpersonal relationships (Vangelisti et al., 2001). The current study adds to the existing family secrets literature because it uses the criteria for revealing family secrets to study the disclosure of a disease diagnosis to family members. To the researchers knowledge, there are no existing studies that have used the Family Secrets Fr amework in this manner. In the past, the study of family secrets typically focused on issues thought to be taboosuch as child abuse or drug use.Therefore, the current st udy has established that this framework is useful for understanding disease disclo sure. Tables12and 13provide a visual representation of how the Social Support and Family Secrets Frameworks are evident in the results of the patient and FDR interviews.
108 Table 12: Evidence of Theory in Patient ResponsesTheory Construct Interview Question Example of patient response Family Secrets Framework The secret threatens ones own well-being both physically & psychologically What was the major reason you decided to tell? I dont know how it was going to come out. ((laughs)) Whether I was going to pass or what. The anticipated response from a confidant is positive What was the major reason you decided to tell? I expected they wasgoing to come visiting, you know, see about me, which they did. The communication context creates an opening for disclosureWhen did you feel it was an appropriate time to reveal your diagnosis? so I guess in some ways it probably was a little easierto do it over the phone, because then you, there is that little bit of a, that distance of while they are absorbing it mostly, in fact I think, yeah, probably its a little easier. The impact of the disclosure on family members is positive such as receiving social support What was the major reason you decided to tell? I didnt expect anything else, except to be here and be with me at least a week or two, you know, after. Of course, if she hadnt been here, my granddaughter would have been here. When the disclosure itself brings some reward What was the major reason you decided to tell? all from my experience my sisters immediately went and had Colonoscopies. They had immediately did.
109 Table 12: Evidence of Theory in Patient Responses(Continued)Theory Construct Interview Question Example of patient response Social Support Framework Emotional Support provision of empathy, love, trust, & caring How did they actually respond or react to the news? Oh, they was there the night I went up to thesurgery and up until I came home. They go home and rest, because they got kids, so theyd go home and theyd rest, and theyd come right back. Instrumental Supportprovision of tangible aid and services that directly assist a person in need How did they actually respond or react to the news? My daughter took over cooking and cleaning actually; Everybody said if you need me, call me; My daughter, my sons takes me to work and my daughters pick me up. Informational Supportprovision of advice, suggestions,& info that one can use to address problems How did they actually respond or react to the news? My children and I talked about it. I told them that they may have at what age they needed to start now with having being tested. Appraisal Supportprovision of info that is useful for selfevaluation (constructive feedback, affirmation, & social comparison) How did they actually respond or react to the news? They was just saying its something that God planned. You know, its something like its out of your control, you know?
110 The face-to-face interviews were used to determine whether constructs, such as the patients well-being, the anticipated re sponse from the confidant, the communication context, the patients perceived impact of the disclosureon family members, and the reward associated with disclosure, influence a patients decision to disclose. It was found that the constructs were relevant to the current study: 1) t he secret threatens ones well being: In the current study it was apparent that some patients experienced a psychological burden of carrying the news of a diagnosis before disclosure occurred; 2) the anticipated response from a confidant is positive: Patients expected their FDRs to be nonjudgmental and were hoping for a new perspective on the challenges associated with being diagnosed with colorectal cancer; 3) c ommunication context creates an opening: Patients told their FDRs about the CRC diagnosisindividually, in person and in groups. They also told FDRs over the te lephone. Finding the right timeto disclose appeared to be influenced bythe familystructure, e.g. whether the FDR lived nearby, the age of the FDRs, or if the FDR would be able to assist in some way. The variability of when and how a patient decided to tell fa mily members was a personal decision which supports the notion that people are more likely to discuss personal or intimate issues in some social contextsmorethan others; 4)the impact of disclosure on family members is positive: In the current study, patients wanted to inform family members that colorectal cancer runs in the family. In this context, revealing a diagnosis has the potential to save a family member's life if an FDR takes appropriate prevention measures; 5) the disclosure itself brings some reward: In addition to prayer, patients expected some form of social support from their family members after disclosure.
111 Another goal of the research study was to examine the rolesupport playsin a patients decision to disclose their diagnosis to a first degreerelative. Most patients stated that they did not expect social supportfrom their family members to result fromtelling them about their colorectal cancer diagnosis. However,when further probed, those who stated that they did not expect social s upport admitted that the support they received was welcomed and expected.Patient descriptions of the different types of support received are also included in Table 12. Support for the Family Secrets Framework was also found in the FDR responses (see Table 13). FDRs described several reasons for patient disclosure. It was interesting to discover that their explanations were consistent with the constructs from the Family secrets Framework. For example, FDRs believe d that patients revealed their diagnosis because thesecret threatened the patients well-being, because the patient thought the FDR would have a positive response, because th ey had a convenient time and location to reveal, because the FDR would provide social support, and because they wanted the FDR to take preventive measures against CRC.
112 Table 13: Evidence of Th eory in FDR ResponsesTheoretical Construct Interview Question Example of patient response Family Secrets Framework The secret threatens ones own well-being both physically & psychologically Why do you think s/he told you? Because she was concerned. She didnt know how bad it was going to be, you know what they was going to find in her The anticipated response from a confidant is positive Why do you think s/he told you? Anything she needed doing, we was there. Whatever she asked me. Bring her food, take her somewhere, run errands. We did anything for her. The communication context creates an opening for disclosure Was the environment good for that type of conversationWell, that was the most convenient way to tell me at the time, because I wasnt there. Now, they could have called all of us over and sat down and told us about it, but it was just easier over the phone.The impact of the disclosure on family members is positive such as receiving social support What do you think your family member expected from you by telling you about their diagnosis? The reason why she told me about it was she wanted me to take care of her. When the disclosure itself brings some reward What do you think your family member expected from you by telling you about their diagnosis? To encourage other family members to get screened earlier and things like that Social Support Framework Emotional Support provision of empathy, love, trust, & caring How did you react when you first learned about the CRC dx? I mean, just be, come to her, you know, come to her and be there if she needed me. Instrumental Support provision of tangible aid and services that directly assist a person in need How did you react when you first learned about the CRC dx? I went home and helped my step dadout with the house, the housework and the running of the house, with her recuperation. Informational Support provision of advice, suggestions,& info that one can use to address problems How did you react when you first learned about the CRC dx? so I started doing my own research to find out. What is Colon Cancer? What is Stage 3? Where do we go from here? What is the treatment? What are some of his options? AppraisalSupport provision of info that is useful for self-evaluation (constructive feedback, affirmation, & social comparison How did you react when you first learned about the CRC dx? The only thing I told my dad was to be strong, and I told him, you know, I had confidence that he would beat it because like I said my dad is a very confident person, so very strong-willed, so I told him
113 An important goal of the study wa s to understand how diagnosed patients influence the screening behaviors of first de gree relatives through the four types of support. It was found that informational suppor t from patients had the strongest influence on FDR screening behaviors. FDRs reported th at patients advised them to get screened for colorectal cancer andtotalk to their ph ysicians about the importance of screening. FDRs also expressed that learning about a colorectal cancer diagnosis within the family increased awareness about the disease including the importance of timely colorectal cancer screening behaviors. Although theoth er types of support were not reported by FDRs as having a strong influence on thei r screening behaviors, the framework proved valuable as FDRs expressed how they react ed to the news of their family members diagnosis. It was found that FDRs offered al lfour types of supportto their loved ones; howeverinstrumental and emotional s upport were provided most frequently. Contributions to Public Health Practice The current study investigated the per ceived barriers, facilitatorsand criteriato disclosing acolorectal cancer diagnosis to first-degree relatives of colorectal cancer patients. This research is important becau se there has been little empirical research exploring the criteria people employ in deciding whether to reveal a family secret (Vangelisti et al., 2001).Results areespecia lly important for the African American population given the high incidence and mortality of CRC among this group. Though the patients in this study were willin g to share their diagnosis with certain family members, the FDRs in the study described some of the challenges that the patients had with disclosure. Disclosure of the di agnosis was stressfulfor patients and FDRs.
114 Understanding the experience of the diagnos ed patient is important for the design of interventions that assist patients with th e disclosure process. It also highlightsthe patients need for assistance coping with the impact of diagnosis. Many people go through a time of grief and sadness when they first learn that they have cancer. They grieve the loss of health and the loss of ce rtainty in their lives (ACS, 2009).Although this copingresponseis normal, it is difficult for most clinicians to fully understand the experience of the patient (Jacobsen & Jackson, 2009). In order for oncologiststo communicate effectively in these difficult situations, it is helpful to assess what th e patient knows and wants to know about his/herdisease in general and, specifically, his/herprognos is (Jacobsen & Jackson, 2009). This is consistent with the current study in whic h patient barriers included fear and concern about how their family members would respond to the news of their diagnosis. These results suggestthat patients should be given a firm understanding of CRC and their prognosis. Once patients have a betterunderstanding of what to expectin terms of their treatment, prognosis, and preventing a reoccurrence, they are more confident in their ability to talk about it with their family members. This study underscores the importance of effective communication between physicians and their patients in terms of CRC treatment and prevention measures. Some patients and FDRs reported that they relied on their physic ians advice to determine whether or not they needed to be screene d. Unfortunately, some patients in the current study were unclear about thei r treatment options and how they could effectively prevent CRC in the future. The need to develop communication strategies and tools to encourage physicians to assess the need for screenin g and promote it when appropriate is clear.A
115 study by Madelensky et al. (2003), found that the strongest predictor of CRC screening was physician encouragement. They additi onally found that physic ian recommendation is a strong and consistent correla te of screening behavior.Patients in the current study said that their physicians never recommended screening for CRC before they had symptoms. Given this information from the current st udy and the important impact of physician recommendation on patient screening noted in the literature, it may be feasible to develop guidelines for physicians to promote CRC screening to patients and to incorporate screening into routine physical exams. Additionally, physicians should inform CRC patients about the possible familial risk for CRC and direct them to resources that deal with the psychosocial affects of diagnosis and disclosure. This study also suggests that CRC patients can play an important role in communicating familial risk to FDRs. Upon learni ng that they had a family member with CRC, most FDRs became interested in how th ey could prevent it. Many FDRs requested additional educational materialsfrom the inte rviewerin order to get more information about CRC. Many were screened and some reported making lifestyle changes after learning of their familial risk. Finally, the African Americans in the study mentioned faith and spirituality as an important contribution to coping with CRC. This information is important for the incorporation of sociocultural beliefs including the role of spirituality in interventions that assist CRC patients with the coping and disclosure of a diagnosis. According to Kreuter, Lukwago, Bucholtz, Clark, & Sanders-Thompson (2003), a sociocultural approach to health information and messages is one in which a groups cultural values,
116 beliefs, and behaviors are recognized, reinfo rced, and built on to provide a context and meaning to health information andmessages. It is important to understand that incor porating cultural values and beliefs alone may not be enough to impact behavior ch ange (Kreuter & Haughton, 2006). A study on tailoring cancer prevention and screening information for African American women found that only when cultural tailoring was combined with behavioral tailoring did it emerge effective in promoting mammography or increased consumption of fruits and vegetables (Kreuter & Haughton, 2006). It also suggests that health communication based on constructs from health beha vior change theories may be more effective in some population subgroups when presented in a m eaningful context such as culture. The current study provides evidence for the importanc e of spirituality in the lives of African American CRC survivors and their families. Additionally,the use of the family secrets frameworkin this studylays the groundwork fo r the future development of cultural and behavioral interventions for this population. Overall, it is important to build commitment from communities, through community-based participatory research (C BPR) methods and to include communityand church-based interventions that are aligned with cultural norms and include community (Robillard & Larkey, 2009).Based on the results of this study, possible interventions include the development of culturally tailored navigator programfor recently diagnosed CRC patients and other pa tients at risk for CRC including FDRs. Patient navigation is a process by which an individual (patient navi gator) guides patients with a diagnosis or possible diagnosis of can cer through the complex cancer health care system to help ensure timely diagnosis and treatment (Oluwole et al., 2003). This patient
117 navigator program may prove effective in a ssisting patients who are unsure about how to prevent a future reoccurrence of CRC and for FDRs who have an interest in taking appropriate preventive screening measures. Since the importanceof spirituality was mentioned frequently in the current study, community and church-based interventions using lay health advisors may have a positive influence on CRC prevention in the African American community. The Witness Project, aprogram in which female African American breast cancer survivors teach their peers about breast cancer and early detection thro ugh telling their stories has shown promise for promoting the health of African Amer icans (Erwin, Spatz, Stotts, Hollenberg, & Deloney, 1996). It would be worthwhile to develop a similar program for colorectal cancer in which CRC survivors share their stories with newly diagnosed patients and those at high risk for the di sease.Survivors could also discuss the challenges associated with disease disclosure and the poten tial pros and cons of disclosure. Strengths and Limitations The primary strength of the present study was the engagement of African American colorectal cancer su rvivors and their FDRs in adiscussion about their internal disclosure decision-making process. Relatively littleresearch has been conducted with African American CRC patients. Additionally, this study used a two-phase research design to study the disclosure process from both the patient and their FDR perspectives, and allowed for comparisonof the resultsthrough the analysis of family units comprised of the patient results and th e results of two or more FDRs.This unique contribution delves further into the disclosure proce ss among family units. Neuman (2003)suggests that this process of observing the same ph enomena from different angles or viewpointsto
118 get a fix on its true meaning is called triang ulation (Neuman, 2003). He also asserts that it is better to look at something from several angles than to look at it in only one way. Triangulation of the theoretical frameworks was also used in the planning of the research and in the interpretation of the data. Given the emotionally laden nature of co lorectal cancer, individual interviews were conducted to obtain an emic view of the disclosure pro cess. Patients and FDRs were able to describe their experiences in their own words, providing insights difficult to obtain from a survey. In terms of data anal ysis, the researcher employed a double-coding technique which allowed for verification of codes and themes among more than one person. According to Barbour (2003),this exerci ses value rests oncontent and nature of any disagreementsrather than the extent of ag reement. Barbour (2003)also states that the dialogue between team membersfeeds back into and informs the development of a coding frame. Such a session reproduces in microcosm the process of qualitative research itself and maximizes the analytic potential of exceptions or potential alternative explanations. The use of the constant comparative method allowed for the development of themeswhich focused on how individuals in teract in relationship to the phenomenon under study, in this case the disclosure of a CRC diagnosis(Dey, 1999). A benefit of this method is that the results are traceable to the da ta so that review of the data at a later time would produce the same results (Strauss & Corbin, 1994). Finally the use of Atlas.ti, a qualitative data analysis software, createda greater potential for the study methodology and analysis to be replicated in future studies because it functions as a documentation cente r, recording all the category definitions,
119 coding rules, and the steps of analysis of all interpreters. The program also facilitates the recording of source detail, th e time and date of th e data collection, storage, and search capabilities (Baxter & Jack, 2008). This study is not without limitations. As w ith many studies of African American patients, this study included relatively few men (Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999; Hatchett, Holmes, Duran, & Davis, 2000; Thomas, Simpson, Tarver, & Gwede, 2010). Future research is needed to obtain a more in-depth look at mens experience as both CRC patients and FDRs. The study sample was also limited by its size. The original goal for this study was to recruit thirty patients and thirty FDRs. However, the low numbers of potential participants in the sample frames made this goal difficult to reach. Reasons for patient non-participation in this study in cluded: 1) patient was too ill to participate, 2) patient did not have time, 3) patient was not comfortable talking about his/herdiagnosis, 4) patient was deceased, 5) patient moved out of state, 6) patient was not interested in participating, 7) family member interception: family member did not approve of pa tients participation, and 8) patient could not be contacted by telephone. Reas ons for FDR non-participation included: 1) FDR could not be contacted by telephone, 2) FDR did not have time, 3) FDR did not know patient had cancer, and 4) FDR wa s not interested in participating. Though there many reasons for non-participation, questionnaire saturation was reached in both phases of the study. However, theoretical saturation was not reached due to the inability to reach those patients who practiced tota l non disclosure.Therefore, the limitedsample and lack of random selecti on greatly limit the ability to generalize the findings to all African Americansor to African Americans in the southern United States.
120 Response bias is another potential pr oblem limiting the ability to generalize findings. The response rate for the patient sa mple was 39% and the response rate for the FDR sample was 80%. Everyone who participated in the study had strong family ties and disclosed to at least one family member. It is possible that patients who refused to participate were less likely to disclose their diagnosis to family members. Future research is needed to assess the proportion of African American CRC patients who fall into each category of disclosure and the reasons for maintaining secrecy. Social desirability bias is another possible limitation. Participants may have adjusted their true feelings and experiences to reflect what they thought was a more socially desirable response given the sensitive subject matter. Finally, the datacollected in this stud y was self-reported and may be prone to some inaccuracy. Though the researcher attempted to reduce recall bias by including those patients who were diagnosed within the last five years, recall bias is still possible due to memory lapse or discomfort di sclosing personal information. However, triangulation of FDRs and patie nt data helps improve the va lidity of the patient results. Recommendations for Further Research Further study in this area of disclosure is clearly warranted. Next steps could include the development of a quantitative instrument that would further capture and address the themes noted from the individua l interviews. Research that capturesthe similarities and differenc es in disclosure among other ethnic groupsand thatexamines gender differencesis also needed. Exploring disclosure for other types of cancers and diseases with familial risk might also prove valuable. Preliminary findingsalso suggest that additional studies on disease disclosure may make an important contribution to the
121 literature. For example, would patients be willing to disclose their diagnosis to family members if their treatment was not as successf ul? Future research should also attempt to reach those patients who practice total se crecy and find out their reasons for non disclosure. This can be explored by attemp ting to reach patients in a clinic setting. Patients may be more likely to discuss non disclosure in a patient setting while undergoing treatment than at a later date. Further, it is important to focus on the development of culturally-specific educationa l materials that move beyond the visual image of racial/ethnic minority groups on the cover, address some of the attitudes, beliefs, and myths about CRC, and replace the lack of knowledge about CRC with factual information (Powe & Adderley-Kelly, 2005). Conclusions Using a qualitative research methodology, this study explored the disclosure process among African American colorectal cancer survivors and the FDRs with whom they shared their diagnosis. In particular th e study examined the criteria people use to decide when it is appropriate to reveal a CRC diagnosis to family members, how social support impacts disclosure, and how social support from patients impactsFDR screening beliefs and practices. Sixteen colorectal canc er survivors and sixteen FDRs participated in the study. While most patients sa id that they were willing to disclose their diagnosis to family members, many FDRs felt that the patients did so reluctantly. This study offers a unique perspective in that patient and FDR responses were compared to explorethe experience from both viewpoints. Findings fr om this study have the potential to: 1) advance the lack of knowledge about the dynamics of CRC disclosure to FDRs in African
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163 AppendixE:Interview Guides Patient Interview Guide I want to thank you for taking the time to meet with me today. My name is Kamilah and I would like to talk to you about how you decided who to tell about your colorectal cancer diagnosis and how the proc ess went for you. Your insight and opinions on this subject will be used to help other people who have to face similar decisions after learning they have colorectal cancer. There are no right or wrong answers, so please say what's on your mind and what you think. The portion of the interview should take about half an hour. I will be taping the session because I dont want to miss any of y our comments. Although I will be taking some notes during the session, I cant possibl y write fast enough to get it all down. Because were on tape, please be sure to sp eak up so that we dont miss your comments. All responses will be kept c onfidential. This means that your interview responses will only be shared with research team members and we will ensure that any information we include in our report does not identify you as the respondent. Reme mber, you dont have to talk about anything you dont want to and you may end the interview at any time. I hope you will feel comfortable here today and share all of your opinions, both positive and negative. We value all your ideas. Do you have any questions about this study or today's interview? Okay, let's begin. 1) Can you think back to when you were firs t diagnosed with Colorectal Cancer and tell me about your experience? 2) When you first learned about your Colorect al Cancer diagnosis what were the first 3 things that came to mind? 3) Which first degree relatives (parents, siblin gs, children) did you decide to tell? (make list) 4) What was the decision of who to tell like for you? (Probe: What was hard, easy? What factors did you consider?) 5) What was the major reason you decided to tell ____? 6) How did it go when you told him/her? 7) Think back to when you revealed your diagnosis, when did you feel it was an appropriate time to reveal your diagnosis? What type of setting was helpful? (Probe: Were you at home? Was it over the phone? Was it quiet?)
164 Appendix E: (Continued) 8) How did you feel when you revealed your Colorectal Cancer diagnosis? 9) How did you expect people to respond? What did you hope would happen (Probe: Did you want them to show that they loved you, cared for you, in what way?; Did you hope they would take you to appointments, help you cook or clean?; Did you want them to find out more about CRC or get more information for you?; Did you want them to tell you that you were handling the news of your illness well or that it wasnt your fault) 10) How did they actually respond or react to the news? What did s/he say? What did s/he do? 11) How were your family members respons es like each other and how were they different from each other? 12) Now I want to ask you about after your treatment. Since your treatment ended, how has your family responded to you? 13) How do you feel now about your decisi on to share your diagnosis with him/her? (Probe: Are you glad/sorry you shared it with them? Why?) 14) Were there any relatives that you didnt tell about your colorectal cancer diagnosis? 15) What made you not tell those relatives? Do you wish you had told them? Why do you say that? 16) As you thinkback about all of the experi ences that we have discussed today, what type of effect do you think disclosing your Colorectal Cancer Diagnosis has had on your relatives? (Probe: What about th eir decisions to get screened?) 17) Do you know if any of your relatives got screened after you told them? (Probe: Who? What did they tell you about their decision to be screened? 18) How did discussing your diagnosis of Colo rectal Cancer compare to other secrets or private informationthat you had to share with family members in the past? 19) When you think of Colorectal Cancer now, what 3 things come to mind? That was a great conversation. I am really th ankful for all your input and honesty. You were very helpful. Do you have any questions for me? Thank you for your time. If any questions come up, you may contact me at the number or email on your fact sheet.
165 Appendix E: (Continued) FDR Telephone Interview Guide I want to thank you for allowing me to call you today. My name is Kamilah and I would like to talk to you about your experience with learning about your family members colorectal cancer diagnosis and how that pro cess went for you. Your insight and opinions on this subject will be used to help other people who have to face similar situations after learning about their family members diagnosis There are no right or wrong answers, so please say what's on your mind and what you think. This portion of the interview should take less than an hour. I will be taping the session because I dont want to miss any of your comme nts. Although I will be taking some notes during the session, I cant possibly write fast enough to get it all down. Because were on tape, please be sure to speak up so that we dont miss your comments. Allresponses will be kept confidential. This means that your interview responses will only be shared with research team members and we will ensure that any information we include in our report does not identify you as the respondent. Re member, you dont haveto talk about anything you dont want to and you may end the interview at any time. I hope you will feel comfortable here today and share all of your opinions, both positive and negative. We value all your ideas. Do you have any questions about this study or today's interview? Okay, let's begin. 1. Can you tell me about when you first learned that ______ had Colorectal Caner? 2. When you first learned about your relative s Colorectal Cancer diagnosis what were the first 3 things that came to mind? 3. Who told you that s/he had Colorectal Cancer? 4. Why do you think s/he told you? (Probe: Did they worry about survival or recovery?; Was the news too stressful to not share?) 5. Was the environment good for that type of conversation? What was good or bad about the time and place that you were told? 6. How did you react when you first learne d about the Colorectal Cancer diagnosis? (Probe: Were you empathetic?; Did you offer to do anything to help (like cooking, cleaning)?; Did you offer advice?; Did you tell them that they handling the news of cancer in a good way?) 7. What impact did this news have on you? Did you do anything differently?
166 Appendix E: (Continued) 8. What do you think your family member expected from you by telling you about their diagnosis? 9. Have you personally been screened for CRC? Was that before or after learning about ____s Colorectal Cancer diagnosis? ; How long after? What made you go at that time? 10. What impact did the diagnosed patient have on your decision (or not) to get screened? 11. Did they do anything to encourage you to be screened? (Probe: Did they care if you were screened? Did they give you informati on on where to get screened? Did they offer to take you to get screened? Did they ma ke you feel good about being screened?) 12. When you think of CRC now, what comes to mind? That was a great conversation. I am really th ankful for all your input and honesty. You were very helpful. Do you have any questions for me? Thank you for your time. If any questions come up, you may contact me at th e number or email on your consent form.
167 AppendixF:Thank You Note
About the Author Kamilah B. Thomas, daughter of Aldwyn and Claudette Thomas was born on October 19, 1978. In 1997, she graduated with honors from Hallandale High School located in Hallandale Beach, FL. She attended the University of Florida in Gainesville, Florida where she graduated cum laude in 2001 with a Bachelor of Health Science Degree. That same year she began graduate school at the University of North Carolina at Chapel Hill and graduated in 2003 with a Master of Public Health (MPH) Degree in Health Behavior and Health Education. Upon completion of her MPH, she became an Association for Schools of Public Health (ASPH) Environmental Health Education Fellow. As an ASPH fellow, she worked at the Centers for Disease Control and Prevention in Atlanta, GA in the Lead Poisoning Prevention Branch. In 2005, she was admitted into the Doctor of Philosophy in Public Health program at the University of South Florida (USF) in Tampa, Florida. While at USF, she studied in the Department of Community and Family Health in the College of Public Health and worked as a Research Coordinator at the H. Lee Moffitt Cancer Center and Research Institute, a National Cancer Institute Comprehensive Cancer Center.